One Day At A Time

Snow Day!!

2012-01-20T13:23:00.000-08:00

Autumn and Brownie are having a blast playing in the snow and going sledding! Almost all of the schools are closed today in the inland northwest. I'm trying to decide if it would be safe to take Isaac out in the snow. He's never been sledding before, but I would worry about him getting snow/water in the trach and the air being too cold for his lungs. Oh well, he doesn't look seem overly disappointed that he's not outside. As usual, some things come to mind when our city has this much snow. Will the power go out? What is our game plan if we there is an emergency and we can't get him to the hospital? Will the nurses be able to come out here? Will they be stuck here? These are things I can't worry about too much or I'll make myself crazy! After the nurse left this morning, I got to snuggle up with this sweet little man and a hot cup of coffee. What could be better?

Back On The O2

2012-01-17T20:08:00.000-08:00

So the oxygen is back in full swing lately. Isaac has been a junky boy in his lungs and needing the 02 during the days and nights...the amount has been all over the place. The nurse and I felt 2 molars coming in that may be throwing him off. No fever, no yellow color in his trach so he doesn't have an infection. He's been a good sport though as we've been giving him more neb treatments. We just have to pull out a few more tricks to get him back to baseline.

Last week he got weighed by the dietitian and he finally hit the 30 pound mark! That is really small for someone his age, but at least he's growing.

Carter's Hope

2012-01-09T10:27:00.000-08:00

Isaac's story was featured in a new website called Carter's Hope. Carter was an adorable little guy with a rare chromosome disorder like Isaac. Sadly he went to heaven way too soon, but his journey lives on as his amazing Mom has made this website in his honor. I remember getting the overwhelming news that Isaac would have special needs. When I came across blogs, poems or positive stories it kept me going during those first few months. Carter's hope has stories of hope from parents who have been there through the tough times and JOYS of having a child with special needs.

Getting Organized

2012-01-04T23:22:00.000-08:00

Life as we know it is back on schedule with the nurses, therapists, teacher and medical suppliers ringing the doorbell (insert me pulling my hair out). Appointments are made for part of 2012. Calendars are bought. I'm going through the medication list and getting rid of some PRN's (as needed) meds that Isaac hasn't used in a long time. Back to reality...my crazy normal. If only I was this organized with the rest of my life, but my little man is at the top of the list.

Today I decided to go to a sale for organizers and bins since Isaac has more toys than I know what to do with in his playroom. I thought I would buy an extra one for Isaac to sit in and play with his colorful balls. I think he likes it:)

Christmas 2011

2011-12-28T20:15:00.001-08:00

We had a nice Christmas as I hope you did too!

Christmas Eve we had a relaxing evening with my Mom. The kids got to open their presents early since Christmas Day was going to be very busy with my in-laws. Isaac was excited about opening his presents, but he really enjoyed listening to the sound of the paper inside the bag. I love the look on his sweet face! Most of the toys he got are good for his fine motor skills and hand limitations. He loves this new drum. He was getting sleepy after opening a bunch of presents and his O2 sats were getting low, so I had to put him on the oxygen for awhile.
It has been nice not having to worry about appointments or therapy sessions right now. I'm really enjoying a mini vacation from the usual!

No Oxygen For Christmas

2011-12-23T11:04:00.000-08:00

Isaac has been sick lately with a family cold. Over the weekend he had a fever and was needing a high liter flow of oxygen during the day and night. Needing the 02 brings some challenges now that Isaac is wanting to be more active on the floor. He still wanted to roll around, except this time I had to make sure that he didn't wrap himself up in the tubing. Also the portable tank only has so much tubing length, so I had to make sure that he didn't go too far or the tank would fall on top of him!

I was a little worried about which direction this cold was going so I had a heart to heart talk with him. I told him that it was almost Christmas and that he needed to get better so that he wouldn't be spending it in the hospital. Today he is better and doesn't need the oxygen. This is what a Mama likes to see. I don't want a fancy present for Christmas. I just want a happy boy without oxygen to snuggle with. Autumn and I were feeling better by Wednesday so we went to Santa's workshop up at the hospital to pick out a present for the boy. Autumn was excited to help the volunteers wrap his present. While we were there, a few kids came in with IV poles and tubes so that they could go shopping for their family members. It made me feel sad for a moment when I realized that those kids would be spending Christmas in the hospital. No child should be spending the holidays in a hospital bed. I was glad to see that they got to take a break from reality for awhile and check out all of the cool toys. If you have a healthy child, be thankful. Having a child home and healthy for the holidays is a priceless gift!

So Much More......

2011-12-15T13:37:00.000-08:00

Two weeks ago Isaac's special ed teacher left us with some homework to do. She wanted us to write down as many words as possible to describe Isaac. The nurses were in on this too and wrote down a majority of the words. Yesterday the teacher had some Moms over from the homebound program for tea and goodies. They gave me this present framed to hang up in Isaac's room. I love that it shows that he's so much more than his disability or health issues. It truly describes him!

Downtown

2011-12-11T09:17:00.000-08:00

Yesterday we decided to take the little man downtown to see the pretty tree and hopefully Santa. There was a huge line to see Santa and the thought of him sitting on his lap after kids with snotty noses makes a Mama cringe. So we skipped that part. Besides, Santa already knows that he's been a super good boy this year!:) He's still doing amazing without the oxygen. Woohoo!

Isaac smiling to the "jingle bells" song. A special moment with Daddy.Checking out the bright red tree.The whole family. Bliss!

Little Mover

2011-12-03T21:35:00.000-08:00

Look at my little mover. We had a party today to celebrate Autumn's black belt and he was showing off his rolling skills for Grandma Jean. He may not be able to walk, but he's quick! We finally had to install a gate because if we turn our heads too long he could accidentally fall down the stairs.
Taking a break to smile at Mom. My handsome sunshine!

Thankful

2011-11-24T07:53:00.001-08:00

I have so many things to be thankful for today, including this sweet and amazing boy!
He's been on room air during the day AND the night. It's unheard of for him to not need oxygen during the night, but he hasn't needed it all week! With Isaac this could change on a dime, but for now...I'll take it!

2 years ago today Isaac was in the PICU for pneumonia and didn't come home until right before Christmas. He also spent the whole month of November and most of December there his first year of life. So what can I say? A Mom can't help but be thankful that he's HOME. We are taking him to Grandma and Grandpa's house today. It should be fun.

Our big appointments went very well this month. Even though we are still electing not to do surgery, Isaac's hips are not showing a much of a change at all since 6 months ago. Last year there was a significant change in a 6 month period and it wasn't looking good. I'm thankful that the appointment wasn't as stressful as I thought it would be.

I'm also thankful for our nurses who make our life much easier and Isaac's teacher and therapists who come to our house every week and work with him. I don't know where we would be without them.

Happy Thanksgiving!

Black Belt

2011-11-22T20:11:00.000-08:00

Last weekend our sweet girl earned her black belt in taekwondo. We are so very proud of her accomplishment. Who knew that she could break 3 boards with 1 hand? Yikes!
Autumn has been in taekwondo since she was only 5 years old and a little peewee. Wasn't she cute?!Taekwondo has been a great outlet for her ever since her brother was born. When she first started going I was able to take her, but after Isaac came home from the hospital it wasn't possible for me. Then her Dad started taking her to a different program and they've been going ever since. It's been a chance for them to bond and they have been working very hard to get to this day!

Isaac's Fort

2011-11-11T12:41:00.000-08:00

I love that Autumn finds fun and creative ways to interact with her brother. Last night she was SO excited to cut out 2 boxes and make a fort for him. At first I didn't know if he would like it, but he actually loved it!

Peekaboo!

A Tribute To Special Needs Moms

2011-11-11T12:39:00.000-08:00

November

2011-11-07T14:59:00.001-08:00

I can't believe it's November already and snowfall is just around the corner! Isaac had a fantastic Halloween. He went trick-or-treating with his Daddy and got to show off his adorable itsy bitsy spider costume. The best part of the whole night for him though was coming home and watching his favorite movies. That's my little homebody:)
November has been eventful so far. Last week he had routine labs drawn through his port at home and the test results came back saying that his BUN levels were sky high. Normal range is between 7-18 and his were 87! Since we have never encountered kidney problems before, I didn't really know what to expect from this. Was he dehydrated? Were his kidneys in trouble? A Mom can't help but worry! The next day the Dr. ordered another blood draw and the results were down to 14! Was it a fluke? We don't know, but it was a big sigh of relief that's for sure. Thanks again for the many prayers on facebook.

Isaac has a few big appointments coming up. Tomorrow we see the eye Doctor and Wednesday we go to Shriner's. Hopefully the X-rays won't show that his hip dysplasia is significantly worse. I usually come out of that appointment pretty stressed. Sigh. Also a couple days before Thanksgiving he has an EEG with neuro to check for seizure activity. He doesn't appear to have seizures during the day, but the nurses and I have suspected that there may be some activity during sleep. It's good to have it done since it's been at least 2 years since his last one.

At least we can get the big appointments out of the way before the snow falls!

Pumpkin Carving

2011-10-31T09:55:00.001-07:00

Last night Autumn and I carved pumpkins together and let Isaac join in on some of the fun. He wasn't too sure what to think about feeling the inside of the pumpkin. It felt weird!What could be scarier than Halloween? A 10 year old carving a pumpkin. Aaaaaaa!
Isaac will make friends with anyone, but he wanted to pass on this guy. He's too scary!Happy Halloween!

Happy As Ever

2011-10-27T22:20:00.000-07:00

Isaac has been doing really well lately and he's as happy as ever. That big smile always brightens my day!!Recently his special ed teacher recommended a program that he would be able to use to communicate and make choices on the iPad. I've always been hesitant to purchase an app like this without trying it out first. Some of the apps are expensive and wouldn't be worth purchasing if Isaac couldn't use it. Isaac needs big pictures and simple choices and this program was just what he needed. So far he's been very purposeful when making choices.
I'm so amazed at how much is in that little head of his. He just has to find a way to express what he needs. I can sense that it makes him feel good to make a choice and get rewarded with it!

Nanu

2011-10-19T10:23:00.000-07:00

As many of you know, my grandfather passed away peacefully last Thursday. Although I'm sad that he's gone, I'm glad that he's at peace. I also celebrate that he got to live 90 wonderful years. Every time I think of Nanu I get a big smile on my face. He was such an optimist! Even in the midst of trying to stay afloat when Isaac was younger, he always had something positive to say about him and our situation.He was a successful man, but most importantly he loved and served God and he loved my Grandmother for 68 years! He was an inspiration to many and I was very blessed to have him in my life.

I Couldn't Resist!

2011-10-19T10:15:00.000-07:00

I know Halloween isn't even close to being here yet, but I couldn't resist posting Isaac in his "itsy bitsy spider" costume. I hate spiders, but I wouldn't mind snuggling up with this one!

Long Week

2011-10-12T19:44:00.000-07:00

This week has been a little crazy so I haven't had much time to post. There have been parent teacher conferences and tons of planning for Autumn's double digit birthday party this weekend. It's going to be a hotel slumber party with her best friends. I'm going to be so worn out by the end of it, but it will be so much fun!

Isaac is doing well and occasionally needs the 02, which is par for the coarse this time of year. He's been enjoying his home visits from his teacher and therapists. We are so very blessed to have them come to the home and work with him so that he can stay well. We are working on loosening up his legs and hips because ever since he came home from the hospital he's been so stiff. Who knew that laying in a hospital bed for 6 days would make such a different in his tone.

I was also talking with the PT and teacher about getting some kind of mount to hook onto his stroller so that the iPad would be closer to him. It seems like when I place the iPad on the tray he wants to hold it up to his face. The school district is letting us borrow this device to help us decide if it would work for him. Super cool AND he can't throw the iPad on the floor anymore!
On a very sad note my Grandfather (we call him Nanu) is not doing well, so please pray for my family on my Dad's side, especially my Grandmother. It looks like he doesn't have very long. He looked peaceful the last time we saw him and Autumn was happy to get a big smile out of him even though he was unable to talk to her. I can't say enough good things about him. He will be greatly missed!

Fall

2011-10-03T09:20:00.000-07:00

I love this time of year! Even though it's been summer weather, I'm already in the mood for fall food, drinks, pumpkins and changing leaves. On Saturday we had a Birthday party for my Dad and everyone made fall food. We had a carrot cake, chai tea and pumpkin ice cream. I even made a yummy pumpkin soup that was delicious! I got the recipe here.
Isaac had a great time at the party getting loved on by his Auntie T and Grandpa Billy. He is feeling fabulous and has been needing zero oxygen during the day, which is back to his baseline.

And can you believe it? In 2 weeks my baby girl will be turning the double digits. Where does the time go?!

The Smile Is Back

2011-09-29T13:15:00.000-07:00

Isaac has been throwing a few curve balls since he's been home. I was getting concerned because he was acting very lethargic and sleeping a ton. Sleeping is usually not a complaint with him. Usually we are trying to get him to sleep because he's such a night owl and fights naps. He was also not focusing very well on me or others around him.

I sensed that something was off so I requested that he would have labs done with his port. Sure enough his C02 levels were elevated and his potassium levels were low. That would explain the lethargy. Pulmonology suggested that we put him on bi-pap and increase his potassium dosage for a day. Yesterday his levels were good, which explains why his little personality coming back. It's so good to see him smiling and wanting to play with his toys again!

On top of the other stresses this week, the nursing schedule has been an issue. Last month a consistent nurse we had for 4 years was terminated from the agency. So just when we thought we had a long term solution, the new nurse didn't work out. So now we are hoping for someone to fill that shift soon!

Just A 1/2 Smile

2011-09-25T15:48:00.000-07:00

Isaac is home and well, sorta happy. He still has that "I don't really care" look on his face. Even when I sang him his favorite song I could only get a 1/2 smile out of him.
The good news is that he's out of that place and back where he belongs! We still have some work to do here with medications to get him back to his baseline. Thank goodness I have the nurses to help me out with some of it.

Autumn had a harder time than usual with this admit. She is very attached to her brother now and was sad that he had to be in the hospital. She came up with me a few times to love on him. I'm so glad that she can do that at home now.Now let's hope for a smooth respiratory season from here on out!

Quick Update

2011-09-22T11:32:00.000-07:00

Just a quick update...I'm using the hospital computer. Isaac is still spiking a temperature and being a mystery. He's A LOT happier after they gave him some sedation to sleep. It was really hard watching him want to sleep, but feeling so restless. They are scratching their heads here as he's been on several antibiotics. The good news is that he doesn't appear to be severely compromised respiratory wise. Today they did a blood draw and a UTI culture. So far the viral cultures are negative. Thank you for your continued prayers that he can come home soon!

Not Happy

2011-09-20T14:06:00.000-07:00

Isaac was admitted to the PICU on Monday afternoon. It was a hard decision knowing whether or not to take him in to the ER, but he had been on antibiotics for almost a week with not much of an improvement. I also learned from the Pulmonologists office that he had a secondary infection brewing. That would explain why he wasn't getting better. Monday morning he had a high temp, his heart rate was really high and his respiration's were up. The nurse working on Monday morning has been with us since spring and said that she had never seen him sick like this. I guess that's a good thing because he's been so stable. Poor bud is not a very happy camper today. The antibiotics are already giving him a butt rash, the steroids are making him restless and the RT's are coming in every 2 hours to give him a treatment. Hopefully it won't be long and he will be in good shape to go home! I can't wait until I can see him smiling again!

Mystery Dude

2011-09-18T16:21:00.000-07:00

Poor little dude isn't feeling so good today. We are on day 6 of antibiotics and he appeared to be improving until today when he started spiking a fever with a high heart rate. I just got off the phone with the on-call nurse practitioner and she ordered a steroid burst, but suggested that we take him into the ER if symptoms worsen. They think that he probably has some kind of secondary infection. When Autumn heard that her little brother had a fever, she wanted to make him feel better by putting a wet washcloth on his forehead. Although I thought it was a very sweet gesture, I'm not so sure Isaac liked it very much at first:)So that's where we're at. I will keep updating here and on facebook.

The Weekend And The Sickies

2011-09-12T11:09:00.000-07:00

Isaac had a very eventful weekend. On Saturday we went to my in-laws house because big sister needed to collect bugs for her science project. It was a hot and sunny day, but Isaac chilled out in the shade next to a peaceful waterfall. I just love this pic...he looks like he doesn't have a care in the world!On Sunday we took him to the fair for the very first time in his entire life! This was a HUGE deal. He did really well with the noises, except when we walked past a rooster call. He didn't know what to think of that!
Checking out the bunnies....Waving at the turkeys...I love this because we call him our little turkey.:)Happy to be with his Mama and sister.....Checking out the goats and one tried to eat Isaac's stroller for lunch!
On a not so positive note, Isaac had a rough night last night and needed lots of 02 plus a temperature. I don't think this illness has anything to do with the outings as he was needing lots of 02 Saturday night. I thought that maybe it was just the probe since he was doing fine while he was awake. It appears to be some kind of trach infection so I sent in a culture today to the lab.

The challenge? It could take up to 2 days to get the results and treat him with the right antibiotics. In the meantime we hopefully won't be visiting the ER between now and then. So prayers are needed that we can treat him at home.

From The Beginning

2011-09-06T09:43:00.001-07:00

I recently added a tab to the blog about our first year with Isaac. Feel free to read about it at http://isaacegrove.blogspot.com/p/where-it-all-began.html or click on the tab above. As difficult as it was to write about and relive those very first months, I feel very blessed that we have such a profound story to tell. Isaac has come so far!

Labor Day

2011-09-05T22:52:00.001-07:00

Isaac had a fun Labor Day going to pig out at the park, an event downtown. I was somewhat stressed out because of the crowds.....I'm not used to being around big crowds with the boy and it made me nervous because I was afraid that he would be on sensory overload or someone would sneeze on him. Seriously, I need to chill! He had fun checking out the ducks and he waved hello to them. A family there with an almost 2 year old asked me how old he was because they thought that he was the same age as their son....ha ha. Isaac is so super small that he looks like 1 1/2 to 2 year old too. Next week I want to take him to the fair for the first time. I can tell that he's starting to notice the animals more when I take him to the pet store. He was really concentrating on the dogs and fish the last time we went there and enjoyed petting a yellow lab.

Isaac should be starting home based school next week. I was getting used to not having a revolving door and that will all change very soon! We are very blessed to get the services that we have between the school district and private therapy coming to the home so that he can stay well during the winter months.

Bittersweet....

2011-08-31T10:15:00.000-07:00

This morning was bittersweet as I sent my big girl off to 4th grade. Where did the time go?? I started to get a little weepy as we entered the part of the school for older grades and found her locker. Then a couple of other Moms I've known for a long time reminisced with me about how it seems like yesterday our kids were little pre-schoolers. I found this cute photo of Autumn's first day of Kindergarten just days after her brother came home from the NICU. Not only has she grown physically in 4 years, but she is also far more accepting of people who are different or have disabilities than most of her peers. God certainly knew what he was doing when he chose her to go on this very difficult, but rewarding journey. That school year was such a blur. I remember just trying to hold it all together around her, the parents and teachers. (Who am I kidding, I still do that!) Thank goodness she was able to go to full day kindergarten so that I could focus on all of the appointments Isaac had in the months ahead (not to mention several hospital admits). We were very blessed that she was able to attend a school close by at the time. When Isaac was hooked up to oxygen and an apnea monitor 24/7, the teacher would walk her home.

Another bittersweet moment was last night when we had to say goodbye to my Grandparents who traveled by car all the way from California to see us. They couldn't wait to get some sugar from that sweet boy. It was bittersweet because we had not seen them in 2 years and it could be a long time before we see them again. We enjoyed our time with them and got some really good photos.

Slowing Down

2011-08-25T11:22:00.000-07:00

It seems that lately I've been slowing down a little on the blog posts and posting more updates on Isaac's Facebook page. Although I will still be posting on this blog, it just may not be as often.

If you would like to be Isaac's friend on fb you can click here. **Please note that I will be very selective for privacy purposes so if I don't recognize your name from the blog world (blog friends) or as a friend/family member then I may not be able to add you to the friend list. :)

--Colleen

Finding A Balance

2011-08-22T08:11:00.000-07:00

Summer is coming to a end soon and we have been trying to make it fun and memorable for big sister. This life with a medically fragile child and a healthy sibling is hard. Finding a balance and meeting both of their needs isn't easy at times. Trying to meet Isaac's medical needs, therapies etc. AND making sure Autumn has some normalcy in her life is a team effort. I'm so grateful for Sam and his ability to do things with her that I can't easily pick up and do with the boy (especially with the trach.) Last weekend they went camping and spent the entire day at the water park. Yesterday we took her and a friend on my Dad's boat and she had a blast!Then there's my little homebody. Sure he enjoys outings and we have made more of an effort to take him places now that he doesn't always need the 02. He's the happiest little boy when he has his home routine (bath, stroller ride, same movie everyday). If his routine is off he gets easily stressed. If we take him to a place with loud noises or too much stimulation he's ready to go home after a short while and back to his familiar environment. One funny routine we started with him in the evening is snuggle time with "Little House On The Prairie." He gets excited when the song comes on and Autumn loves snuggling up with her little brother. They are so cute together!

Whew!

2011-08-11T14:52:00.000-07:00

Today I had our annual a meeting with DDD to determine if Isaac still qualifies for his current home nursing hours. After answering a zillion questions, they decided to keep him where he's at. Even though he's more stable than he used to be, he still needs lots of care, meds and monitoring. He was such a little turkey while they were here and was showing off his rolling skills. He also started laughing so hard around them and doing a little jig to row, row, the boat. Such a silly man!

Now that that's over with, I'm treating myself to a DQ blizzard for a good cause. With each blizzard they will donate money to the Children's Miracle Network to help our local hospital. Don't forget to buy yours today! I was also thinking yesterday about how we could help our local Children's hospital more. After all, Isaac spent most of his first year of life there. I'm looking into getting Autumn involved in helping me purchase toys for them so that the kids can enjoy their stay more. I recently downloaded a wish list so this should be fun.

Isaac is still his happy self, but he caught a mild cold from me so he's been sporting the 02 during the day and night. I'm really starting to look forward to school starting and getting back into a routine. Autumn is getting very bored! I told her Dad to take her camping this weekend so that they can go have fun together. She wants to go to the pool everyday, but that's not easy to do with the boy. Sigh. We did have a nice time last weekend at my Grandmother's house. My cousins came up from California and Washington DC to visit. It's so strange to see them all grown up! Can you believe my Grandmother just turned 87 years old? I can only dream of looking this good at her age! My beautiful Daughter and Grandmother....

A Little Adventure

2011-08-01T08:32:00.000-07:00

Last week our morning day nurse was on vacation. Instead of sitting around the house all day, we decided to take Isaac downtown. After packing the go bag, suction machine, oximeter and wheelchair stroller, we were off on our little adventure. The river was beautiful!
Big sister was very helpful. She wanted to push the stroller the whole time. My Mom knows how to make me smile real big!
Chillin' out in the sun after tasting Autumn's peach flavored snow cone. Isaac got a summer makeover over the weekend. Here are the before and after photos.

Before:After:
What do you think? I miss the curls, but I think he looks handsome in shorter hair.

First Tan For The Little Man

2011-07-24T07:49:00.001-07:00

Have I mentioned that Isaac has a tan? Yep, he's been spending so much time outdoors this summer that he's turning into a little coffee bean.
This is very cool indeed because there were many summers that were spent mostly indoors because he was either too sick, his oxygen sat's were not very good or he needed more medical equipment. Isaac has his own language and when we mention going to the park he gets excited and tells us that's EXACTLY what he wants to do! We have to spell it out for the dog though or she will go nuts! Last week Isaac's Great Aunt Karen and Uncle Dave came up for a visit from California. It's always a treat to snuggle with the little man!
Sweet moments with big sister!
Isaac's new shirt that he got from Aunt Cassie when she went to Disneyland. It says "I may be small, but I'm the boss! Isn't that the truth?!

The Big Appointment

2011-07-14T13:25:00.000-07:00

Yesterday we went to the big appointment to talk more about the pros and cons of having hip surgery. At the last appointment I left feeling extremely overwhelmed and hardly able to explain it all to my husband. Since we both needed to be on the same page, he was able to go to this one. I was so relieved that he could be there to help me sort out what's best for our sweet boy.

It's a fact that Isaac's hips are 60% dislocated and they will most likely continue to get dislocated because of his high muscle tone. He may not be able to speak, but he's very good at giving us cues. I'm certain that we would know if he was in any pain, especially while in the stander or the gait trainer. The surgery could be very long and invasive. I know that many kids have had it done before, but he has a very fragile respiratory and immune system.

So the big picture is that RIGHT NOW he's a very happy boy and healthier than he's ever been. It took a long time to get here. We wouldn't want to jeopardize that in any way. So we play wait and see and HOPE that there is no pain in the future. If that happens we can revisit the possibility of surgery again. For now we don't feel that it's the best decision.

On a positive note, Isaac has been enjoying his backyard swing and walks to the park almost every day!

Sometimes......

2011-07-10T16:31:00.000-07:00

Most of the time I try to find the positives, but sometimes I dream about what life would be like if summer activities with a trach didn't cause so much worry.

Earlier we went on a nice family walk to our local park where they have a splash pad. Sam, Autumn and the dog were having a blast, but I found a nice place in the shade AWAY from the water for me and Isaac to sit and watch. Water is like hot lava for a trach kid. I thought maybe I could just get his feet wet, but there were too many kids there and it was likely that he would get sprayed in the face by accident.

But sometimes you have to take risks, so we put him in his kiddie pool a few days ago. Big sister wanted to fill it up with more water than I felt comfortable using. I let her splash water on his feet, but I was a nervous wreck the whole time! I was thinking about how nice it will be if ONE DAY he gets that stupid trach out and he can play in a pool without any worries.

He did have fun kicking his feet in the pool and then dried off in the relaxing sun. This is the life!

A Happy 4th And A Big Decision

2011-07-05T08:42:00.000-07:00

We had a nice 4th of July BBQ with family yesterday. I got some cute pics of him looking patriotic in his american allstar shirt.

A special moment with Mama!
Isaac was happy to scoot around in his gate trainer and also show his Aunt Cassie his dance moves (rocking out to row, row the boat). It was great seeing my Mother-in-law too and she seems to be doing so well since her hip surgery last month.
Speaking of hip surgeries, we have another appointment with Shriner's on the 13th. This will be our final appointment to decide on IF and when to do the surgery for his hip dysplasia. Please be praying that we make the right decision that is best for Isaac's quality of life. If he does have it done I will be planning it for the fall. That would be a better time to wear a spica cast.....not so hot! Is there ever a good time to wear a spica cast? I think not.

Wordless Wednesday

2011-06-29T09:18:00.001-07:00

You can never have too many toys!

Pictures!

2011-06-23T17:58:00.000-07:00

We had a great time on our trip to the coast. Isaac and Brownie were on their best behavior while we were gone. I'm so grateful for the nurses, my sister-in-law and my friend Cindi for helping us make this trip happen. Our hotel was amazing overlooking the beach and ocean waves. It was very relaxing. The weather held up pretty good, except on Saturday it was cold and rainy so we went on a road trip to the cheese factory and to a really cool air museum. We went to the aquarium the next day. I've never seen so many smiles on this girls face. The amazing shark cave!
On Monday Autumn's old school friend Elliot and his Mom came down for a visit from the Portland area. We had a great time with them on the beach.

Elliot dodging the waves.

Autumn getting ready to run into the waves. Me watching the world go by.Autumn's favorite activity was hanging out on the rocks and collecting crabs, shells, starfish, and all kinds of cool sea creatures.
Autumn was so excited to find a hermit crab. Yep, that's my girl! Looking for more crabs and seashells on our last night there.

Vacation Time!

2011-06-14T22:29:00.000-07:00

School is out and there are only a few more days until we take Autumn to the coast. We're looking forward to making sandcastles, flying a kite and just watching the world go by. Of course I will miss my sweet boy to pieces. He will stay home with his peeps while we are gone. It will be next to impossible for me to not want to call and check in on him all the time. Although I will miss him, I am in need of a break from the day to day stuff that comes along with having a trach kid. Lets face it, it's not easy. Over the weekend we took Isaac to a big local park that has gardens to see the pretty flowers and ducks. I love that we can go on so many more outings with him this time of year.

Big sister sprained her ankle on Thursday at a school field trip. It wasn't hurting her that much, but it was last night so we went to the pediatrician's office today. Everything looks good and they gave her an ankle brace. I'm afraid they are getting too familiar with us at that office lately!

Back To Baseline

2011-06-08T10:05:00.001-07:00

Isaac has been doing fantastic since being home from the hospital. He's on room air during the day and just enjoying being a happy little man. We had a park meetup last week with my Moms group for special needs kids and Isaac made a new friend. He was being a stinker because he was super tired so I couldn't get a smile out of him, but aren't they adorable together?Continue to pray for big sister. Now that we kicked the walking pneumonia she is now struggling with urinary health issues. Sigh....always something! Please pray for health and most of all strength for me and Sam.

HOME

2011-06-01T09:28:00.000-07:00

Whew! That was a long weekend. I'm so glad it's over with! Isaac came home last night and he's doing well. It will be awhile until he's totally back to baseline with the 02, but there's a major improvement since being on antibiotics for pseuodomonas. I took this photo of him and big sister snuggling the day before he went to the hospital. I really do have sweet kids!
Thanks again for the nice comments, thoughts and prayers.

Memorial Weekend In The PICU

2011-05-29T15:11:00.000-07:00

Isaac was admitted to the PICU this morning because he had significant need for more oxygen during the night. We took him to the ER at 2 am after we had him cranked up to 6 liters (as far as the tank would go) and he was still de-satting. For a few days he's been a mystery boy. Super happy, not acting sick, but his oxygen requirements were all over the place. Since sending in a culture this week it grew out an infection. So anyway, they are treating him with IV antibiotics. Since I've seen him MUCH sicker than this in the hospital, my guess would be that he won't have to be there very long before we can treat him at home. It's been a year since our last admit so all things considered, that's a big thing!

Amazing Children With Rare Chromo Disorders

2011-05-26T09:22:00.000-07:00

Big Sister

2011-05-23T21:52:00.000-07:00

Big sister Autumn is slowly getting better. Her Dr's office finally found the type of pneumonia she has with some tests. It's a form of walking pneumonia that's apparently hard to beat. She's on another type of antibiotic now. I was very frustrated with them because it took forever for them to finally diagnose and treat her correctly. Since having Isaac, I'm not afraid to be a squeaky wheel when a Dr's office doesn't get it together. I don't think they knew who they were dealing with!:)

Other than possibly having a mild trach infection, little man is doing well. We took him to the dentist today because he's driving us up the wall with this teeth grinding thing he does. Even the nurses are freaking out. He doesn't seem to do it at night, just during the day when he's bored. They didn't seem to have any advice for us, but they said that his teeth don't look like they are in bad shape from it.

The dietitian came over today and said that he hasn't gained weight since her last visit, but he gained a whole inch in his height! Little man is still way below the charts, but at least he's growing!

I cut Isaac's hair last week because he was starting to get bat wings on the sides:) Now he's extra cute.

Craziness...

2011-05-18T19:38:00.000-07:00

Lately I am burned out to the core from sitting in Dr. offices.

Tired just isn't the word anymore.

Since our ER trip on Thursday night, big sister has been on Augmentin to hopefully clear out this walking pneumonia crud for good. Yesterday we had a follow up appointment and her chest X-ray showed that since being on 2 different antibiotics for 2 weeks, there hasn't been much of a change.

She's going to see Isaac's pulmonologist (hopefully this week) and have a chest CT done to figure out what's up. She doesn't seem super sick right now like she did on Thursday. The Dr.s office said that she can continue going to school, but she just can't do taekwondo, PE or recess until she's better. This thing is tricky because look at how good she looks in the photo. I thought for sure she was getting better. BTW the girl in the middle is my cousin Denise. I haven't seen her in 6 years. It was fun to catch up with her over the weekend and we had lots of good laughs together.
Please continue to pray and send good thoughts for little miss to get better and for the pulmonologist to find out how to treat her. We really want to take this mini vacation next month to the Oregon coast.....it would be a much needed break for us. If she's still sick, we might not be able to go.

But, there is good news....

Isaac is doing so well respiratory wise that on Tuesday his pulmonologist said that we only have to give him neb treatments 2 times a day. I know that doesn't seem like a big deal, but for a long time we had to give him nebs every 4 hours around the clock just to keep him out of the hospital!

Spring!!

2011-05-13T22:15:00.001-07:00

Spring has finally arrived here after several months of snow, more snow and rain. I'm happy to report that 2 days ago I got a sunburn on my nose and our fruit trees are producing beautiful flowers in our yard. I'm also happy to report that after 3 weeks, I'm finally done with that horrible bronchitis. I had to go on another round of antibiotics on Monday because I was still coughing a ton. This is a very resistant bug we have going around because poor Autumn started having a relapse with pneumonia yesterday. I had take her in to the ER last night because she was having trouble breathing good and she was spiking a temp. After a chest X-ray the Dr. said that she had pneumonia in her left lung. They put her on a different antibiotic this time. I seriously don't know what's going on with us girls! I've been going to the health food store and we've been taking certain herbs to boost our immune system.

Isaac had a Shriner's appointment on Wednesday. You may remember this post where he had X-rays of his hips and I was suddenly hit with the reality of him developing dysplasia. It appears that with this appointment there isn't an improvement and that his hips are actually 60% dislocated. I was thankful for the nurse practitioner because she was very informative and understanding when I expressed my concerns about the pros and cons of a spica cast in the future.

On a positive note, Isaac isn't needing the oxygen during the day. I can also see the gears turning more in his sweet little head when the teacher comes over and works with him. Here he's concentrating really hard when he's taking the pegs out and putting them back in.

Isaac Says "I Love You" To His Mama

2011-05-06T12:44:00.000-07:00

Since Isaac has many hand limitations, signing I love you isn't an option, BUT he can say it on the iPad. Of course I wish my sweet boy could tell me vocally, but I'm thankful that he's able to tell me any way he can!
Here he's saying that he wants a toy. Each time he touches the star it changes color and it says another word.
Isaac has 4 of his favorite toys to choose from. He chooses the iPad this time.
Good choice!
You're probably wondering how Autumn is doing. She's feeling much better. They sent her home on Monday with 2 strong antibiotics. Yesterday I thought she was ready to go back to school, but apparently it was too soon because she felt tired and weak and spent time in the sick room. So today she's resting some more and will hopefully have more energy by Monday. Thanks for the prayers. It's always 10 times harder to have a healthy child sick when you already have a child with medical issues. Isaac still isn't on room air, but hopefully we can work on those lungs and he'll be back to baseline soon. I'm hoping from here on out we stay well because we are planning a mini vacation soon, which will be HUGE for us!

Happy Mother's Day to all of the awesome Mama's out there!

Urgent Care.....

2011-05-02T16:28:00.001-07:00

With Isaac's sister today. She was coughing a ton this morning with a high fever so I called her pediatrician, but they couldn't get her in. After waiting 2 hours at urgent care, they did a chest xray and told me that she has pneumonia. A simple visit to the urgent care quickly turned into a hospital bed with IV antibiotics. Luckily we only had to stay there for an extra hour and a 1/2.

Poor Autumn, she's been through so much with her brother that it's almost too much for her to deal with needles or any kind of medical procedure period! She was pretty freaked out about getting an IV. She's home now and is feeling weak with a high fever. Isaac continues to struggle with his cold and is still needing the oxygen during the day and extra neb treatments. It does seem like he's slowly getting better so hopefully he will be having room air days soon.

What else can I say other than this Mama is tired and I just wants us all to be healthy!

Sick Mama!

2011-04-25T09:28:00.000-07:00

Happy Belated Easter! Sorry about the lack of blog posts.

Last Friday I came down with a fever that lasted for a whole week! On Wednesday I went to the the doctor and they ruled out the flu (surprisingly because my temp was 103). He sent me home to lay in bed for 24 hours. Since I'm Isaac's main caregiver, laying in bed for 24 hours isn't exactly an option. Luckily I was able to temporarily get some extra help for the boy. By Thursday they prescribed me a Zpack and prednisone so I'm finally getting better. Please pray for the little man today. He woke up with a high heart rate and junky lungs. He isn't acting like himself! I'm hoping and praying that he doesn't have what I had.

We made the most of Easter and the sunshine. We had a nice dinner with my Mom and Autumn dressed up real pretty for church....Isaac was happy to be chillin' out watching movies in his pool of balls with his new bunny friend.
I got his spare pair of glasses tinted last week so that he would look extra cool for the summer. We spent Saturday afternoon outside getting some Vitamin D.
I'm hoping for more nice weather so that we can be done with this cold and flu season!

Too Cute!

2011-04-18T19:52:00.000-07:00

I just wanted to share these adorable button pads for little ones who have G-tubes. I just purchased some today!

http://www.branyansbuttons.com/

Sunshine!!

2011-04-16T09:49:00.000-07:00

A few days ago the sun was shining in the late afternoon so I took Isaac outside. When the neighbors saw him scooting around in his gait trainer they thought that he was so cute. Before I knew it we had a big audience! What can I say, the kid is a celebrity. I really hope that we will have more sunny days like this soon! He's doing well, but I have a strange virus right now so I'm really hoping that I don't pass it on to the boy. I'm afraid we snuggled too much yesterday!

A Celebration!!

2011-04-10T09:37:00.001-07:00

Isaac had a fun birthday party yesterday with the family. He was having a stellar day on room air and he also slept in so he was alert and happy most of the day! I have been feeling rather down lately because each year brings up the emotions of how delayed he is and how we are still dealing with the trach and everything that comes with it.....the nurses, the tubes, the monitoring, the list goes on. Then yesterday I watched him scoot around the house in his gait trainer without any attachments. I was reminded that he really has come a long way! I got him a Nemo cake because it's his favorite movie in the whole wide world!

I love that he scoots backwards in his gait trainer and usually only uses 1 foot so he looks like he's trying to skateboard. Our goal this year is to get him to move forward with both feet, but that could be a process. Oh well, I'm just glad that he can move around any way he can! Here he's trying so hard to see his great grandma so that they can hold hands.

Having A Ball!

2011-04-04T14:15:00.001-07:00

For an early birthday present Isaac got a pool full of 200 colorful balls. At first he was really scared, but when we put him in his chair he started to really like it. So fun!

Looking Back....

2011-04-01T09:29:00.001-07:00

Sorry about being MIA, I'm afraid I've been a bit of downer lately. This time of year I start getting melancholy, grumpy and sentimental. Isaac's birthday is approaching and although it's an amazing celebration of his life and the miracle that he's still with us, it brings back a whole bunch of memories and big realities.

His IEP was on Wednesday and although I'm so glad that he's doing better than ever, it's big reality check that I have a severely developmentally disabled child. I know, I know...look at how well he is doing? Isn't that what counts? Yes, I will get there, but for now I need to go through it. With that comes strength and then acceptance. I've gone through it time and time again. When you have a child with special needs you will be plugging along just fine and feel like you have finally arrived. Then suddenly it hits....sometimes out of nowhere. After you go through it for the 500th time, something beautiful happens.....acceptance, more strength and a new perspective. Trust me, it's not a bad thing.

During this time I also start to reminisce and look at photos of the very beginning. Wow, what a journey! Some of these photos I never shared on the blog because they weren't digital photos. This was taken just after he hit the 4 pound mark. The moose is from his favorite nurse in the NICU. He was still so tiny!This was 1 of the first visits from his sister. She was proud to have a little brother. Little did she know how much her life would change. How she would decide that maybe someday she would like to be a physical therapist when she grows up. I'm normally not this tan, it must be the lighting. Anyway, I love this photo because Isaac looks like he's trying to wave goodbye. It was our last day in the NICU after 4 long months. Little did I know how much my life would change or how much I would change. Did I know the amazing people I would meet along the way? That I would start a Moms group or share our amazing story at a couple of events? Did I know that God would travel this journey along with us the whole way...yes, and he most certainly did.

Already??

2011-03-22T19:02:00.000-07:00

Isaac's IEP meeting is scheduled for next Wednesday. I just can't believe it's that time already, but next month is his birthday. How is that possible? Since Isaac was in survival mode for the first 3 years of his life and he's staying healthy more often, I feel as if I can talk about more goals for him. His therapies are all home based...he has 2 PT's, 2 OT's, a speech therapist and a teacher. Most of them are from the school district and a couple of them are from private therapy. Some days I just want to pull my hair out when the doorbell keeps ringing throughout the day. There are people in my house all the time, including the nurses. Aaaaaah! I just gave up on putting my face on and getting out of my pajamas....they've all seen me at my worst!

The teacher and I are discussing the possibility of him attending a classroom that has other medically fragile preschool kids for just 1 or 2 days a week during the summer. We have to get the Dr's approval for him to go there because awhile back we tried getting his approval and he said no way! That was when he was getting way more respiratory illness though.

Can you believe he's only been to the ER and to an outpatient procedure all winter and not 1 hospital admit! Last year he spent a total of 6 weeks in the PICU......not fun! I have to say, when they sent us home with that dreaded bi-pap last winter I swore that I would just put it away in my closet. I was upset that we would have to get attached to 1 more thing. Then after discovering that his co2 levels were up the roof, we tried using it at night. It has made such a difference in his overall respiratory status. Room air during the day, not as many pneumonia's, he recovers from a cold quicker....the list goes on.

No sweet pictures today, I thought I would quickly post because my daughter has a yucky virus and a fever. I thought Isaac was getting a cold, but he's doing good now. I'm trying to take care of them both and keep her away from her brother. Pray that the rest of us stay well!

Finally.....

2011-03-16T20:20:00.001-07:00

Last night Isaac had a spa day with Mom. He was cooperating for me this time so I cut his hair short. Now he doesn't have the curly locks and it's weird seeing him with straight hair!
After 2 months of training and fill-ins it looks like we have finally arrived with the home nursing situation. There's a nice nurse trained for Mon, Tues mornings and another for Wed, Thurs, Friday mornings. Autumn approved of the nurse who came over yesterday and told me that she was "awesome." Getting big sisters approval is very important!

Big Boy!

2011-03-09T21:49:00.000-08:00

This week Isaac went to the Endocrinologist for his hypothyroidism and he weighed in at close to 30 pounds with his clothes on. I don't know how accurate the scale was though because they weighed me and then they weighed me again while holding him. Apparently he's too big for the baby scale.

He used to be 30 inches tall for a very long time, but now he's a whopping 32 inches tall. He's still extremely short for someone his age, but that's OK because he's just going to be the little man;)

Today his PT came over and brought us a gait trainer to try out. We get excited for him every time he moves a foot forward. I posted some of these pics on his FB page.

Whoa, what's this thing?One foot in front of the other.....

Just A Little Something I Started.....

2011-03-04T08:37:00.000-08:00

A few people know about a support network I started organizing back in January where I meet with Moms just like me who have extraordinary children. Most of them have special needs children who have been through countless hospitalizations or surgeries. They may need feeding tubes, oxygen or ventilator support. Some of them have experienced the long hospital stays and tubes and now their children are doing great! Those are very valuable people for this group....someone who has truly been through it and can live to tell about it.

An inspiration.

What I wanted was an opportunity for Moms to take a break for an hour or 2 and talk with others who truly "get it." Sometimes the conversations get deep, but mostly there is a lot of laughter involved.

Did you know that it's possible to laugh when you have a special needs child with medical needs?

Actually, I think that we laugh more often than most parents because it's a daily necessity. Their has been lots of brainstorming involved, promoting etc. So far it's been an experience. Of course community is something I've learned is a necessity after blogging with amazing Moms who have been there too! I love, love, love this poem that pretty much sums up what it's like to meet with others who have been through more than we ever imagined.....

To You, My Sisters
By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

What's He Trying To Do?

2011-02-27T09:21:00.000-08:00

Because Isaac has very low tone in his arms, legs and trunk, he's never been able to crawl or get up on all fours by himself. Lately he's been doing this new thing where he gets up on his elbows, tries to lift his little bottom up and then starts to rock back and forth. You can see that this is very hard work for him. Maybe there is crawling in his future after all! Every milestone in life is HUGE! Never ever take mobility for granted.

No Words.....

2011-02-21T14:45:00.000-08:00

Just a special moment with my little man. Do you think he likes me?

Haircuts And Mysteries

2011-02-15T14:44:00.001-08:00

Isaac's teacher came over last week and helped him make this valentine card for me with his scribbles on it. I thought it was cute, but I already know that he loves his Mama!
I cut his hair for the first time ever yesterday. His day nurse used to cut it, but now I have to learn how to do it and it's not easy! He hates anyone touching his head and wants to turn around to see what's going on back there. Hopefully I can learn how to do a good job. He's been a little mystery man the past few days. After our weekend getaway, the nurse said that his heart rate went up really high and he was needing some oxygen. Last night he needed 1 liter of 02, which is really high for him. It's a mystery because his lungs don't sound bad and he doesn't have a fever or act like he has a cold. So I don't know what's going on, but he looks great so I guess that's all that matters.

This Week

2011-02-10T09:46:00.000-08:00

This week has been super crazy with a few appointments and well.....the whole nursing situation. I don't have a nurse today, but Isaac and I are going to snuggle and watch movies in between meds. Sometimes change is hard, but sometimes it means that it's time to open up a new chapter in the book. On Monday we went to the Pulmonologist and Isaac was showing off big time! His sats were in the high 90's on room air and his lungs were (are you sitting down?) clear. Anyone who knows Isaac well knows that even on the best of days his lungs are never clear. I know this can change on a dime, but I was proud.

I've been brave enough to take him on little outings here and there during the week. It's good for him to know that we're not always going to the doctor every time we get in the car. My favorite outing with him is the book store because he gets to look at cool picture books and I can get good coffee. We didn't stay long last time because a little girl walked in and starting coughing. I said it was time to go! I can't wait until spring/summer when we can actually go do more things. I'm SO done with winter!

It's almost that time again...Valentines Day. My husband and I will be celebrating 12 years. We are getting away for a couple of days soon. Away from the kids, chaos and reality. It will be a nice (and much needed) break!

Isaac's Favorites

2011-02-03T21:45:00.000-08:00

A few people, including Isaac's special ed teacher have asked me how I found some of the apps he enjoys playing with on the iPad. One of the things I love about blogging is getting great ideas from amazing sites such as this one, or reading about daily experiences with learning and communicating such as Juniors Voice. Since Isaac is in the beginning phase of making choices with his Go Talk device, I haven't purchased anything for communicating yet. Some of those apps are expensive so for now we are just having fun until I can do more research. Since he loves cause and effect, these are some of his favorites so far. It doesn't require very much effort for him to make cool things appear on the screen.....

iBeams

iLoveFireworks

TouchyBooks

Doodle Buddy. (He likes playing with the stamps because it they make fun noises).

Art Of Glow

Baby Piano (fun and colorful)

Toddler Jukebox (Has all of his favorite songs)

Forest Friends (piano, stories, coloring)

Slightly Overwhelmed

2011-02-01T14:58:00.000-08:00

I'm still taking it day by day with our journey with new nurses. Most of my mornings have been filled with phone calls back and forth between 2 agencies and getting our new nurse trained. If I haven't signed blogs, returned emails or phone calls I apologize. I haven't gone to my church group or other activities because I'm just trying to get through the week.

We did find a nice nurse who's working Monday and Tuesday mornings and she's learning Isaac's routine and cares. Isaac is adjusting well to her and is being his sweet, social self as usual. He has certainly charmed this new lady with his personality and cuteness. We're still looking for a nurse for Wed-Friday mornings and the agency is trying to come up with some ideas so keep praying!

Yesterday we took Isaac to an eye appointment and his eyesight hasn't change since last year, even though he is very nearsighted. Isaac can only see 3 to 4 feet away without his glasses. He didn't like it when the doctor put drops in his eyes and held a lens next to him. Poor guy, he doesn't like doctors coming toward him with anything period!

A blog post wouldn't be complete without photos of Isaac playing with the ipad.....

This is really cool!

Change

2011-01-24T11:17:00.000-08:00

There have been some big changes going on around here. Isaac is doing so well lately and he's been on room air (no oxygen) most of the time. He wears his PMV like a champ and his sats have been great. His Pulmonologist has approved for us to decrease the amount of nebulizer treatments he gets during the day. This will certainly make life easier for everyone, including ME. It requires some multi-tasking to make dinner, help with homework, laundry, dishes and balance a medication schedule. I've been able to make his schedule more Mommy friendly and Isaac friendly too so that he has more time to play!

The nursing situation has taken a drastic turn as well. There are new nurses in training right now and we are hoping to find a good nurse. Autumn is excited to have the job of asking the nurses important questions and telling me later what she thinks of them. It's so cute to see how protective she is of her brother. She's trying to think of some good questions for them. Needless to say the next month or so will be interesting with new people in the house. I could use some prayer that we find someone who works well with us and Isaac. I know that God is in control and he always takes good care of us, I have no doubt that he will provide.

My Little Teacher

2011-01-19T09:09:00.000-08:00

Isaac is my little teacher. He's taught me so much about what true happiness means. It's being loved and accepted regardless of your limitations or imperfections and finding joy in the simple things in life. Isaac doesn't need much to break out into a great big smile, a favorite song, a smile from a loved one or a caregiver is all it takes. Isaac would never want any of us to look at him with sadness or pity. He just wants us to love on him and have a good time with him.

After Isaac's ENT procedures, an anesthesiologist came over (one I've never seen before) to see how he was doing after the procedure. He looked at Isaac with sadness. He said a few things that I didn't appreciate very much about how grateful he was that his granddaughter is healthy and doesn't have a trach. I know he meant well, I don't think he meant to offend me at all. Some people just don't understand. I was getting a little annoyed with him and couldn't wait for him to leave! I felt like I needed to explain to him how happy he is at home and that he actually does have a good life in spite of his health issues and limitations. Since Isaac was recovering, he couldn't see the REAL Isaac, the one at home who has a sparkle in his eyes and smiles real big. When I see this picture, I see a little boy who just wants us to be silly with him and enjoy him. Don't be sad, that's just a waist of time!

More Music Fun

2011-01-11T15:27:00.001-08:00

We're having so much fun with our new toy! Isaac's new favorite is the Jukebox app where he selects one of his favorite songs.

Hmmmm....maybe this will be a good one.
He's so happy to hear that he chose "The Itsy Bitsy Spider." The one picture he recognizes from his Go Talk device is "Twinkle, Twinkle Little Star," so he will try to choose that one on purpose.

We FINALLY got Isaac's ENT procedures done yesterday! Everything looked good except for the ears. She removed lots of yucky junk and the old ear tubes. She didn't put new tubes in because she said that they were not functioning properly for him anyway and causing more of an obstruction. I guess that would explain the smelly sock factory we had going on in that right ear. Whew! He's doing well since the procedures, but needing just a little o2 today.

Musical Kid

2011-01-04T15:37:00.001-08:00

We got an Ipad for a belated Christmas present a few days ago. I know Isaac can't talk or communicate much, but we know that he loves anything that has to do with music. The baby piano is his favorite so far. It's easy for him to use with his hand limitations.

Hmmmmm, this is interesting.Concentration really hard.....This is cool! Our ENT procedures are scheduled for Monday. I'm hoping that he keeps those lungs clear and has good Potassium levels so that we can finally get it done!

Much Better!

2010-12-30T15:30:00.001-08:00

Isaac is feeling much better since being on antibiotics. His lungs still sound wheezy on both sides, but we will continue to work on that with neb treatments. He had fun today trying out his new firetruck that he got for Christmas!

I hope everyone has a Happy New Year!! I know I will because it's my birthday!!

ER Visit

2010-12-27T16:25:00.000-08:00

Well Isaac never had his Ear, Nose and Throat procedures done today. I had to cancel because he was sick all weekend. I'm hoping that 3rd time is a charm and maybe we can finally get it done in 2011. I rescheduled the procedures for January the 10th. (Shh, don't tell Isaac! )

While we were making dinner on Christmas Eve his heart rate went up to 175 beats per minute while he was just chillin' in the bed. I knew that meant trouble! By Christmas morning his temperature was high and he was very congested. He wasn't his happy and smiley self. The nurse came over in the afternoon so that we could go to a family party....a much needed break, I was so exhausted!! We had a blast, but when we came home the nurse said that his fever was higher. He also needed 4 liters of oxygen while sleeping.

By Sunday morning, he was lethargic, pale and his urine had a strange smell to it. I decided that it would be best to take him into the ER. I requested a urinalysis, chest x-ray and trach culture. His urine and chest x-ray was questionable. It looks like sisters cold got the best of him and in the meantime he acquired a urinary infection. The doc sent us home on antibiotics. Isaac is already regaining his color and not having the "in the zone" look on his face. Hopefully he will be back to his smiley self soon!

Christmas Eve

2010-12-24T08:45:00.001-08:00

Merry Christmas Eve everyone!! I haven't spent much time in blogland lately.....we've been busy around here eating, cooking, wrapping, shopping, watching Christmas movies and hanging out in our PJ's. There are many festivities planned the next 2 days starting with dinner with my Mom and presents, breakfast at my in-laws and more presents and then a big family party at Sam's relatives house tomorrow night. Isaac is joining in on all of this, except for the party. He gets pretty tired in the evening so he will hang out with nurse J. They will have a good time watching "Frosty The Snowman" together and playing with his new toys.

After Christmas, on the 27th Isaac is going under anesthesia to have some ENT procedures done. We tried getting these done a few months ago, but the anesthesiologist sent us home because his Potassium levels were critically low. Now his levels are within normal range so we are ready to give it another try. He will have a bronch, ear tube replacement and a look at his nasal passages (because he only drains on 1 side). Big sister is getting over a chest cold and he seemed more congested yesterday than usual, but I'm hoping that it's nothing to worry about. I will be sure to update on how it all went.

Have a Merry Christmas!!

It's Here!

2010-12-17T09:05:00.000-08:00

And we even got the canopy too!

It's Not Scary.....

2010-12-11T18:15:00.000-08:00

That's what I tell Isaac about the Christmas tree, but every time I put him next to it he gets really scared. You can see the look of hesitation on his face. He rolls over to the other side, but sometimes I catch him rolling halfway over just to take a quick peak at it. Silly boy!
I feel bad for him because he can't enjoy the tree or certain toys because they scare him so much. I can't blame the guy for thinking the world is a scary place. I mean, he's been through some scary stuff his short little life. The sensitivities are definitely neurologically related though. He simply can't handle loud noises, bright lights or new textures. His therapists have been working with him on this by bringing him quiet toys. We noticed that if they bring toys with bright colors he associates them with loud noises. Last week his teacher brought white cotton balls for him to pick up and place in a bucket and he wasn't scared of those at all. The OT has suggested that we start a technique where we brush his arms and legs. Here is a description of what we are doing. We're supposed to do this several times a day. We do what we can, especially with Isaac's full medication schedule. Autumn has lots of fun doing this for her brother and she likes making him VERY sleepy.

Just For Smiles....

2010-12-04T10:15:00.000-08:00

My adorable little Santa having fun in the stander..............

Snow!

2010-12-01T08:00:00.000-08:00

We have so much snow here, I've never seen anything like it this early in the year. It's beautiful and fun, but with a medically fragile child there are just a few things to consider. We need to have a game plan if the power goes out. Luckily he uses liquid oxygen at night, but we have to make sure that his other equipment is charged at all times. Getting him transported him to the nearest Children's hospital if we need to could be challenging too. Luckily we only live 20 minutes away. Some other things to think about are if the nurses will be able to get here or if they will be able to leave. During the big snow in December '08, we had a couple of nurses stuck here for awhile. One even had to sleep on our couch until Sam could get her car shoveled out!

So far, so good.

Here are some pics of our winter wonderland. Autumn and Brownie were playing on the deck last night and had a blast!
Our swing set over the weekend.
Gotta love a man who shovels snow with a smile on his face!
This morning after ANOTHER snow storm. The snow is getting heavy and icy.
Isaac has the right idea. He stayed indoors and snuggled up with his sister and a good book.

Happy Thanksgiving!!

2010-11-25T20:09:00.000-08:00

I hope everyone is having a happy Thanksgiving so far! We had a very white Thanksgiving here in the northwest. This is what our deck looked like this morning.
The snow is going to continue to fall throughout the weekend. It will be interesting to see how many inches of snow we get by Monday! What can I say? Thanksgiving with the little guy was more than a Mom could ask for. We took him to my Dad's house and had a really good time. Everyone was happy to see him there and he got lots love and attention. We lost his glasses so he's been wearing his spare pair. I still think he looks cute in them, but the aqua ones are my favorite. Hopefully we can find them soon! Here are some pics of our day....

All bundled up and ready to go!

I think he LOVES his sister!Playing with his favorite toy at my Dad's house.
Having a special moment with Mama.Being goofy with Grandpa Billy!
Snuggles with Grandma Jean (by this point he was tired and ready to go home!)

A New Perspective On Thankfulness

2010-11-20T08:57:00.000-08:00

Since having Isaac, being thankful has a whole new meaning. When you have a special needs child with a life limiting condition, your perspective changes drastically. I used say I was thankful for material things such as the car and the house. I wanted to be like "those people" who could buy anything they wanted. Although I'm grateful that I have a roof over my head and food to eat, the people I love mean more than anything to me now.

Exactly one year ago Isaac was a very sick little boy in the hospital.Right now I'm thankful that we are not there today and that he's well and thriving. Yes, we have had many obstacles, but what's important is that he's HERE and he's HAPPY.

On Friday my almost 90 year old Grandfather had surgery to remove bleeding in the brain. This was a very risky surgery for someone his age so we didn't know how it would go. All morning I prayed and I was relieved when my Dad called me after the surgery to tell me that he was OK. He's currently recovering in the hospital now, so please continue to keep him in your prayers. I'm thankful for him because he's always so positive and has something good to say about everyone. Here's a picture of him with Isaac on Christmas 2008.
What are you thankful for?

Hip Problems

2010-11-18T12:07:00.000-08:00

Yesterday we took Isaac to Shriner's Hospital for routine X-rays. Usually in the past they just check his spine and hips and tell us to continue with therapy and stretches. This appointment was different. Isaac's hips don't look good and he's developing dysplasia.According to the doctor, this is only going to get worse unless there's some kind of intervention. He talked about orthopedic surgery and also having Isaac wear a Spica cast for 6 weeks (which sounds more like 6 years). If you don't know what a Spica cast is, it's a body cast worn from the waste down. They showed us a demo....it doesn't look fun. I simply can't imagine making my sweet boy go through that. Luckily I was able to get a copy of his X-rays and then showed them to the PT when we came home. I will be doing much research on hips, therapy and the pros and cons of surgery. That's what us medical Mama's have to do before making major medical decisions! Sam and I agree that Isaac has been through enough in his little life and any kind of medical intervention is always determined by what's best for his quality of life. The dilemma is that if we don't have surgery and the Spica cast, his hips could get worse. In the long term he would become very stiff where it could be next to impossible to diaper him. Also with the dysplasia getting worse he could experience a lot of pain in the future. So much to think about, research and take in. There are many other storms going on lately in our lives, including the health of my Grandfather. It's interesting how God knows just what I need though. I haven't been to my Women's bible study group in awhile because I've been so busy, but for some reason I decided to go today. They were talking about the storms of life and then they played the song "You never let go." God never lets go no matter how difficult the storms of life are!

Maybe By Christmas?

2010-11-12T10:32:00.000-08:00

Isaac's wheelchair stroller has been a process. We borrowed this one for a short time and ordered it in June.When insurance faxed paperwork with some important questions to get it approved, the PT was on summer break and didn't receive it. Now that we're starting the process again, they are asking questions such as if it's medically necessary for him to have a canopy. What? The PT is working with me on this and we are hoping to get it approved soon. Maybe he will have it by Christmas. Just maybe.......

Sharing And Reflecting

2010-11-06T22:11:00.000-07:00

Recently I was asked to share Isaac's story at 2 events this month. Since I have no experience speaking publicly or being in the spotlight, this was a little out of my comfort zone. The first event was at a conference about early intervention services where I was asked to share our story and talk about our experience with therapy the first 3 years. There were a few other Mom's of special needs children sharing their experiences too. Our situation was unique though because all of his therapies were home-based. Isaac's therapists were amazing and they were good about understanding that his health came first and therapy came second. Although I was grateful that they were able to come out to the house because of Isaac's health issues, he got very limited services. I hope that what I said at the conference made a difference and will help other parents get more home-based therapy for their children. After taking a deep breath, I was also asked to share our story for a conference about serving the family when a child is seriously ill. The child life specialist shared what I wrote along with some clips of Isaac with his family. I was happy to meet a Mom there who appreciated our story. She's just beginning her journey with a medically fragile child and the uncertainty of a rare disorder. I remember that place, it was such a unbelievably hard place. After the conference I started thinking about Isaac and his life today. I remember those first 2 years and how much I focused on his survival and how long he would be here with us. Now, even though he still has the tubes, I feel like he is thriving. Seeing him enjoying life, his people and his surroundings causes me focus more on how happy I am that he's just here having a good time.

Isaac's having a good week, but still has these chronic ear infections going on. The ENT couldn't get him in sooner than December 27th to replace his ear tubes, but I'm trying to be a squeaky wheel about it. There's only so many times I want to add Cipro drops to the med schedule. Most of the time lately he doesn't need 02, but sometimes he gets congested and just needs a tiny amount during the day. That's OK though because he still looks cute in his new pajamas. A man on a mission!

Super Sister

2010-11-01T09:47:00.000-07:00

Super Little Man and Super Sister....Super powers!Autumn and her Dad have a tradition every year where they go trick-or-treating until they drop. Last night they were out for almost 5 hours! Crazies. What in the world am I going to do with all this candy in the house?Isaac and I were not up to that so I dressed him up and he greeted the trick-or-treaters with his cute smile. The comments I got at the door were funny. Some people thought he was a doll for a minute and some kids his age said "look at the baby" because he's so tiny. I'll admit, for a moment it was hard to see typical 3 year olds getting excited about trick-or-treating and enjoying the festivities. Isaac doesn't understand that it's a holiday and well, he doesn't eat much candy if anything. He certainly didn't look like he was complaining too much, so I stopped feeling sorry for myself. I mean seriously, how can you be sad for long with this face?

Super Little Man

2010-10-29T13:06:00.000-07:00

He will melt your heart faster than a speeding bullet! He's stronger than a locomotive! Able to conquer a respiratory infection in a single steroid burst! It's a bird! It's a plane! It's........... Super Little Man!

Busy Week

2010-10-26T17:01:00.000-07:00

Wow, it's been awhile. Where do I begin? Isaac got his GoTalk device last week. I can already tell that he's starting to understand what he's suppose to do with repetition. It may be a process for him because of his hand limitations. Recently I added more OT in the home through private therapy. I'm really excited about this new OT as she really seems to know her stuff. He will get an extra hour a week in addition to the OT he's already getting from the school district.
Last weekend we went on a getaway to a resort that has a big indoor water slide park. Autumn wanted to go there as part of her birthday with her friend from school. They had a blast and the condo we stayed at was beautiful. It was fun going with kids, but hopefully sometime soon Sam and I can get away, just the two of us. We are overdue for something like that. It's not easy to go anywhere longer than a day with Isaac's health problems, limited nursing hours and family help. Isaac was being a turkey a few days before we left as he started spiking a fever and needing 4 liters of 02. I thought our week was going to progress into an ER visit, but after getting antibiotics in his system he got better. Thursday morning we finally have an appointment with the ENT to discuss looking in his right ear again because it keeps getting infected.

Isaac wasn't sure what to think about these pumpkins at first, but when he started banging on them like a drum he thought it was fun!

Where Does The Time Go?

2010-10-18T09:19:00.000-07:00

It seems like just yesterday I was holding this baby girl in my arms and now she is 9 years old. Autumn was born a little early and was only 5 pounds 12 ounces. She was the smallest baby I had ever seen!
That was until I had this little peanut. (Isaac at 2lbs, 8 ounces)
Looking back I remember how traumatic it was for me when she had jaundice and had to wear a light blanket for a whole week. Isn't it funny how life changes? We had a really nice family party on Saturday and Isaac got lots of love and attention from Grandma Jean, Gammy, Grandma Carolyn and his Great Nana. I think he was in Grandma heaven.

Isaac, Autumn and Grandma Jean.....
Isaac getting sung to by Grandma Jean......
The birthday girl and my Dad.....
Isaac had a good weekend, but last night he started acting very strange. We call it his "neuro mode" where it looks like he's having a seizure, but he's not. I took a video of him and I plan on sending it to the Neurologist. He usually only acts this way when he's coming down with something or is uncomfortable. Today he needs a little more oxygen than usual and is more congested.

No Doubt About It

2010-10-12T09:17:00.000-07:00

During Isaac's first year we didn't get a lot of interaction from him because, well he was just trying to survive. it wasn't until he was almost a year old that he started to look at his "peeps" and smile. I'll never forget the day I was rocking him in the rocking chair and he finally looked up at me directly and gave me a purposeful grin. I cried. Since I wanted him to recognize me as someone important, I started talking to him in my "funny voice." Anyone who has been to my house or knows me well knows "the voice." Yes, I sound like a crazy lady, but when he hears that voice coming he lights up like a Christmas tree. My daughter rolls her eyes sometimes because there are days where I catch myself talking that way to the rest of the family.

We have been very fortunate with Isaac's favorite nurse L who works in the mornings so that I can get things done and collect myself. He loves her to pieces, but when I walk into the room I can tell that he knows that I'm somebody special. I don't know if I will ever hear him say "I love you" vocally, but I never doubt that he does. I don't ever doubt that he knows that I'm his Mommy. I don't doubt that he knows that I would go to the moon and back for him. Sometimes a smile with a sparkle in the eyes is more than a simple "I love you." He doesn't have to tell me. I just know.

I found the lyrics to this song by Meaghan Smith the other day from another blog.

It's in our hello

In the way your smile glows

And it's in our good bye

In the tear in your eye

And all in between

When you're lookin' at me

I know, I know, I know

What you don't say

It shimmers through

In the things you do

When you write me a note

And send it by the post

What you might not sign

On that bottom line

I know, I know, I know

What you don't say

Words are not needed

And though my ears

Could be misled

My heart can hear instead

What goes unsaid

You'll leave me with this

A hug and a kiss

And that little phrase

Those three words

You can't say

But please don't feel blue

Cause I always knew

And I know, I know, I know

And I love you too

Flashback

2010-10-08T18:18:00.000-07:00

This was Isaac's first Halloween back in 2007. Look at that peach fuzz hair! Now he has a full head of curls! This was a bittersweet time because the next day he got severely sick with pneumonia and had to spend several weeks in the PICU.
I love this costume in 2008. I still can't figure out if he was a dalmatian or a cow.
2009.....The cutest pumpkin in the pumpkin patch and his first time ever trick-or-treating!We went through the closet yesterday and Autumn wanted to see if the costume would fit her. Hmmmm.......I don't think so! Is it really that time of year again?

Great Video About Understanding Rare Chromo Disorders

2010-10-02T12:15:00.000-07:00

Taking It All In

2010-10-01T17:25:00.000-07:00

It was a gorgeous sunny fall day yesterday and Isaac didn't need his oxygen, which was a plus. He's been needing it lately due to being congested. We're just trying to take it all in before the cold weather hits. I wish that Mr. Sunshine would stay with us for just awhile longer.
Watching Daddy and the doggie run around in the sunshine.

Happy to be getting some Vitamin D.

Options

2010-09-29T21:42:00.000-07:00

Today the speech therapist, teacher and tech guy came to the house to discuss communication devices for mr. man. It was very interesting to me. I'm so fascinated with how far we've come with technology for disabled children. There's so many different options that are available based on the child's ability. Although the Ipad seemed like a super cool idea, we decided on what would work for "him" cognitively and with his hand limitations. We decided it would be best to try out the Go Talk 4 and see how he does. Then maybe later down the road we can look into the Ipad option.

Isaac started getting that lovely smelly sock smell coming from his right ear (pew), so we had to go to the dr. yesterday to get a script for ear drops. I'm afraid he will have to go outpatient sometime soon to check out those ear tubes now that his Potassium levels are back to normal. On a positive note, we took him to the eye dr. today and he no longer needs to have his tear ducts reopened. After being on eye drops and ointment for awhile the eye crust has disappeared and his eyes are all cleared up. So that's one less thing to worry about!

Isaac's TV Buddy

2010-09-25T11:23:00.001-07:00

Isaac got this bear on Valentine's Day from the hospital when he had RSV and now it's his TV buddy.
"Quit taking pictures Mom, this is our favorite part!"
Isaac surprised me with the "back to school cold." He didn't even get really junky or anything in the lungs like he has done in the past. I think that the bi-pap he uses at night has really helped his lungs stay clear.

Isaac's teacher is bringing an Ipad this week to try out along with some other communication devices that we haven't tried yet. I'm so excited to see how he does with the Ipad. He's got more going on in that little head of his than people give him credit for. For example, if I ask him which toy, book or movie he wants and I hold up 2 of them, he will touch the one that he wants. It's so cute to see the gears turning as he tries to decide which one. It's so funny how the doctors talked as if he wouldn't even recognize us and here he is making choices throughout the day and trying out an Ipad. You have come a long way little boy!

Better

2010-09-19T15:27:00.000-07:00

Isaac was feeling so much better today that we took him to the pet store on a rainy day. Autumn wanted to take photos of the pets with her camera while we were there. Isaac LOVES fish and his favorite movie is "Nemo." I really wish that we had an aquarium in our town. I know that he would really enjoy it!

He also got to pet a bunny,

See a tortoise,

and a cute puppy.Now that respiratory season is coming I have to get more creative about our outings. I can't take him to the park like we did most of the summer. I'm trying to think of places where we could have fun, but there isn't a ton of germs. Is that even possible? With the trach and his low immune system I have to be very careful.

Not The Best Of Days

2010-09-17T07:36:00.000-07:00

Autumn has had a cold/stomach bug combo this week and Isaac and I woke up congested. The day nurse called in sick today because she has a high fever. Aaah! I'm disappointed because I was suppose to go to Women Of Faith with a friend this weekend, but I may have to cancel. Please say extra prayers for Mr. man. As you know he doesn't do colds well....it goes straight to his lungs and can warrant a hospital stay. Even though I keep thinking that, I forget that he's much stronger and better respiratory wise than he was a year ago.

On the worst of days I still need humor, it's what keeps me going. Here's a funny photo I took last week of Autumn hiding Isaac's hair. She wanted to see what he would look like with a pony tail, but she was afraid that he would get too embarrassed if we took a picture of it. Oh, the things this poor guy has to go through!

Cute Snuggle Bugs

2010-09-12T10:08:00.000-07:00

Now that Isaac isn't needing oxygen all the time it's easier for him to snuggle up with with his sister in her bed. She really wants him to sleep with her, but I think the oximeter would keep her awake all night!

We will be seeing the Ophthalmologist soon to decide when to reschedule the surgery. Since decreasing the lasix his Potassium levels have increased, but I'm almost thinking about waiting until spring since we are going into cold and flu season again. Isaac starts home-based school this week with his teacher and therapists. Sometimes I feel bad that he isn't going to the school, but then the memory of him spending 6 weeks in the PICU last winter comes back to me. No thank you!

I've also been getting his new rooms organized. This is what a closet of a medically fragile child looks like. We have medications, Lysol wipes, gloves, tubes, bags, tape, diapers and of course the go bag in the corner. Everything is labeled for the nurses.
What does your closet look like?

A Family Party

2010-09-05T18:22:00.000-07:00

On Saturday Sam's boss had an annual summer party at his house. It's always fun getting together with family, watching the kids run around and eating really good food. Did I mention the food? Yeah, amazing! All you can eat ribs, steak and grilled chicken. Unfortunately Isaac has never been well enough to attend, but this year he was feeling good! I was a little nervous about how he would handle all of the stimulation because he's so sensitive to noises, but he did great!

Everyone was happy to see him especially this cute dog named Trupe.
Trupe being protective of Isaac. So cute!Isaac's cousin Donny came over to say hello.Grandma singing "this little light of mine."
Isaac's cousins Kim (left) and Elisa (right). Trupe was feeling left out so he wanted to be in the picture too.

A New Month

2010-09-01T22:48:00.000-07:00

A new 3rd grader!
New floors.....
A cute boy sleeping in his new room.

Update On Big Sister

2010-08-31T12:29:00.000-07:00

In a previous post I mentioned that we were looking into some minor health issues with big sister. She had an X-ray requested by her Urologist for some other things. The Pediatrician's office called me last week to say that they were concerned that her spleen was enlarged on the X-ray and that they wanted us to go in for further testing.

My heart dropped, my mind started racing, I felt sick to my stomach.

Is this it? Is this where the other shoe drops?

I know it sounds like an over reaction, but it was hard for me to think positive with all that we've been through with Isaac. The worst thing I did was look it up on the Internet. I should know better!

Today we went to an ultrasound to check out her spleen. She was so cute, she kept telling the tech how much she didn't like that sticky stuff that they put on her belly. When it was over we went to the Pediatrician's office to find out the results.

Everything looks normal. There was nothing to worry about! Whew!

So my little girl is healthy and ready to enter 3rd grade tomorrow.

Thank you for praying!

Cancelled

2010-08-26T09:11:00.000-07:00

Isaac's surgery was cancelled this morning after he was accessed and everything. They did a last minute lab draw on him and his Potassium levels were dangerously low. Of course we are used to critical levels around here and it normally doesn't phase us, but the anesthesiologist didn't want to touch him. They were afraid he was at risk for his heart stopping while under anesthesia. You know, normally I don't feel so stressed out about a procedure for Isaac, but I felt like my Mommy radar was going off. I guess I should always listen to that. We will reschedule the surgery at a later date after he gets more bananas=)

Now I'm off to go do something fun for myself while a nurse is still here.

Under Construction

2010-08-25T12:48:00.000-07:00

What a difference the hardwood floor looks so far from our old carpet.The little man did not like any of the noises. Bang, saw, scrape! He was scared to death the first day and just wanted to snuggle, but then he eventually got used to it. I took the kids to the park now and then to get some fresh air and get away from the construction for awhile. Since we have been mostly living downstairs, we have to get creative about our activities. Here Isaac is doing a balancing act on his ball. This exercise is really good for his trunk and head control as nurse L holds him at the thighs and lets him do the rest of the work.
I'm gearing up for Isaac's procedures tomorrow. I have my superwoman shirt ready to go! We will arrive at 6 am and they will probably start at around 7am. It will take about an hour and a half. Prayers that we get home the same day. Also, there is a minor medical concern that came up yesterday concerning Autumn. I won't know for sure what's really going on until next week, but just please pray for peace. As Mother Teresa said "I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. "