It's Been Awhile!

Hello, its been a very long time since I posted on how we are doing!

I just happened to stumbled upon my blog this morning and thought to myself "hmmm I need to write in this thing." So much as changed and so much has also stayed the same. Isaac still lives in a  group home for medically fragile children that's just 10 minutes away from our house. I try and visit him about 2-3 days a week. He has a blast when I see him because I make him laugh so hard. He loves his visits with us, especially on Sundays when all 3 of us usually come and see him after church.
Julie, his amazing nurse still works there and is a familiar face for his happy soul. He still amazes me with how happy and content he is. I don't have to worry about how he is doing when I'm not there (unless he is sick) because I know he is his happy and content little self.

The group home has been a blessing for us, but something we definitely had to get used to. Surprisingly I have only gotten positive feedback from others who knew the struggles our family went through, especially when I literally fell apart and everyone was going down with us. I love how involved I can be and still feel like a "person" again. Still, there will always be a whole host of mixed emotions.Some positives from it has been more time with my daughter who by the way is 17!!! Sam and I just went to Hawaii a couple weeks ago for our 20th anniversary.  I also got a part-time job at a thrift store that I enjoy.

Isaac is going to be 12 in April!!!! Remember when a milestone was for him to turn 5? He is getting HUGE and nearly impossible to pick up. He still attends school in the fall and spring, but remains in the home-bound program during the cold and flu season. Isaac has been in okay health. The worst was probably this past year when he had to have 2 separate urology surgeries and ended up really sick after each one. He still gets IVIG treatments for his immune system deficiency about every 3 weeks. A nurse from the infusion center comes in and gives him his treatment for a couple of hours while he watches movies. Recently he's been pulling tricks with his blood pressure and so he recently saw a Nephrologist to find out what might be going on. We are still waiting on the lab results of that. Then he might have to go on some BP medicine.

I'm sure there is SO much more I could write right now. Sister is already in college! She started a program where she goes to college and also gets high school credit at the same time. Because of Isaac, she wants to potentially do something in the medical field. She's driving and growing up fast! Her hobbies still include girls wrestling, violin and being a social butterfly as usual.

Well that's all, hopefully I can start remembering to write in this again. Thank you to everyone who has and continues to be part of our journey!

Life Is Different

Life has been very different since my last post which was back in January. As many know I am the kind of person who puts 110% into being a Mom to my kids. Unfortunately I forgot to "put on my oxygen mask first" and the plane began to crash about a year ago. Shortly after Isaac started needing IVIG treatments I started having some pretty severe symptoms stemming from anxiety....to the point where I wasn't unable to eat, sleep or function. In the spring we put Isaac in respite care at a wonderful home for kids like him with multiple medical needs. This was supposed to be a temporary thing for healing, but he is now considered "voluntary placement." This means that we have many parental rights such as making medical decisions, visiting, going to appointments and even taking him home on occasion. In fact we recently took him home for Thanksgiving and his Grandma's birthday party. Isaac gets 24 hour care where he lives. The best part is that Julie, a nurse who did homecare for us for sometime decided to work there too. We have a peace of mind knowing that she is working there with him.  Eventually I got on the right meds and started taking care of myself. I started healing. I'm slowly finding where belong, since I was Isaac's main caregiver for 9 years. I started writing for a magazine at our church. I am also volunteering at a crisis pregnancy center. I have very little recent employment experience so I'm finding where my strong points are. I'm very busy with a teenage daughter who has many after school activities and carpool. I still go to many appointments with Isaac and visit him frequently. We have also become very attached to some of the other kids at the home.  Here are some pics of our many visits since last spring....

 

 

In Which Isaac Is Doing Well And I Go To The Doctor

There are several things I've learned the past few months.....

Who my real friends are. I've even made new friends in the journey. 

How important my family, especially my husband is to me.

Feeling good, thinking well and finding joy is more important than anything money can buy. 

It's Ok that I currently can't be or do the things I'm used to doing. 

It's Ok that I'm the one who has to go to the Doctor. 

So what happened? Back in October I started having awful physical symptoms that was possibly triggered by anxiety. This went on for many weeks. I went to counsellors, doctors, was prescribed this and that. I finally crashed and burned in November I had to get treatment. My husband had to juggle Isaac's care, the nursing schedule and taking Autumn here and there. Not to mention during that time our city had a blackout from a 70 mile an hour wind storm so Sam was taking on helping family members and their homes. I came home right before Thanksgiving. I have lots of physical symptoms, mostly related to the meds or lack of adequate rest. It feels like a long road ahead to recovery. Many people have said it will get better. 

Isaac is doing well through all of this. He's getting so big and has a big boy look. He is enjoying having the teacher and therapists come to see him during the week. Winter is hard because we don't get out much. 

We had a good Christmas, even though I wasn't feeling quite like myself. Oh and during all of this suddenly my beautiful daughter grew up! 

Thanks for the continued prayers. 

What's new?

Isaac has had 2 IVIG infusions up at the hospital since the beginning of September. He has handled it well with no major side effects. 

It does make for a long day and increased stress taking Isaac somewhere for 5 hours every 3 weeks to have this done. I personally don't know if it's worth the stress. I am working on getting an alternative treatment that can be done in the home that may not take as much time. 

In case you missed why we are doing this...

-Isaac has a condition called hypogammaglobulinanemia

-This means that he is very prone towards infections that normally are defended against by antibody responses. He also has a low white blood cell count which makes him very prone to illness. 

-IVIG is called intravenous immunoglobulin. It contains antibodies from over a thousand blood donors. Isaac gets this through his port a cath so he doesn't feel any pokes or any pain during the administration. It usually takes 3-5 hours to administer and is usually done every 3-4 weeks. 

We could use some prayers that 

-We have wisdom to know what avenue to take next with this. 

-We can get it done eventually in the home  (before I go insane). 

-He can start attending his school again by the spring. 

Happy fall everyone! 

Decisions

Isaac has been seeing a new Doctor for his immune deficiency. She was hoping that a shot called Prevnair would help him build antibodies to the kind of infections that he is prone to. The lab work showed that it did not. It's clearer now that Isaac may need further treatment, which would be an infusion of antibodies called IVIG therapy. 

This treatment does not go without side effects so it's hard to know if it's the best decision. The only way to find out is to try it. If he doesn't handle it well, I wouldn't want to put him through anything that reduces his quality of life (a smiling boy) so it may not be worth it. If it goes well it could increase his quality of life as he could potentially go to school and places without getting sick as often. Win! 

The other tough decision is school. The Pulmonologist doesn't really want him there, but my plan was to send him there on a modified schedule. He really loves it as long as we can eliminate the possibility of getting sick all the time. Can we just have the best of both worlds? I'm the kind of person who has trouble deciding what to have for breakfast so mega decisions like these and a peace of mind does not come easy. Thank you for your good thoughts and prayers as we decide what is best for our sweet boy! 

Update

It's been a really rough couple of months for us for many reasons, but there seems to be a glimmer in the clouds this week. 

1. Isaac continues to get ill often even after removing him from school. Lately he has been getting these mysterious fevers that last for a day or 2 and then disappear. We are left wondering what he is catching this time. We saw a new Immunologist the other day. It would be hard to explain what Isaac has to the non-medical field. 

Isaac was born with a condition called Hypogammaglobulinemia. You may have to google it:) Basically his body doesn't make certain antibodies to prevent infection. The Doctor gave him a shot called Prevnair 3 and will draw labs later to see how his body responds to that. If he does not respond to this then our next option is IVIG therapy. This is pretty invasive so we will take this one step at a time. 

2. Isaac is getting much bigger and in turn is causing us to lose and then not gain valuable nurses. He only weighs 41 pounds, which in my opinion isn't that huge since I've seen special needs Mamas with kids almost twice his size. People ask how I do it. What can I say? When you have a child you love you would jump off a cliff for them....and lift them if needed. 

This week we got a new bath system where we don't have to lift him at all! It has a chair that slides into and out of the bathtub. Then we just wheel that chair to the room. That will be a lifesaver for all of us. We also got a hoyer lift. Since most kids are at least 50 pounds before getting a lift, Isaac is very little for it. However, I'm happy to have it available in the home as needed. 

Again we wait patiently for the stair lift and a chair I'm trying to get for him. That process is SLOW. 

Thank you for your thoughts and prayers on this. I know very few people still read our blog because of Facebook. 

Birthdays and Hospital Stays

Isaac had a fabulous birthday. I think this is the first time he had ever spent his birthday at school. Of course they sang his favorite "Happy Birthday" song for him probably 20 times. 

We also had a small family gathering. I still can't believe it's been 8 years. He's so tiny! We went with the Nemo theme this year. 

Within 24 hours of the excitement, Isaac was admitted to the PICU. He caught a very bad virus apparently from school that hit his lungs quickly. By Monday his heart rate was 185 beats per minute and he was needing 3 liters of O2. We spent 8 hours in the ER before we were admitted. I was pretty tired and cranky. Plus the hospital doesn't know him like they used to so sometimes they were not following orders correctly. 

Isaac stayed in the hospital 5 days and made a quick recovery. He is enjoying being back in school again (just as long as sick kids don't spread their germs this time.) 

Birthday

In 3 days it will be Isaac's birthday! Even though he probably thinks everyday is his birthday because we sing the "Happy Birthday" song, it is a reason to celebrate. However the date of April 13th is a memory that is hard to forget. Our life as we knew it had changed forever. Due to distress, Isaac had to be delivered prematurely via C-section. He was much smaller than we imagined at 2 1/2 pounds! 

Shortly after birth, we were told one diagnoses after another. We found out he had a very rare chromosome disorder. Doctors told us many speculations of how long he would live, if he would be capable of anything or even be responsive to us. He spent 4 months in the NICU and calculated with all of the admits he spent 3 months in the PICU. That's 7 months in the hospital the first year of his life!

 

Isaac has taught us over the years the true meaning of joy and finding contentment in any circumstance. His quality of life is something he defines. Everyday he wakes up with multiple disabilities and health issues. Everyday he wakes up smiling, laughing and enjoying LIFE. 

Happy Birthday Isaac! 

Spring

Today it was 60 degrees so we went for a stroll around the  park. Isaac was happy to get out of the house and get some fresh air. I think he knew we were getting a picture together. 

Isaac has been a puzzle lately as he seems fine during the day, but at night he is needing some extra oxygen. This usually means he's either brewing a trach infection or has a new virus.  I turned in some labs yesterday so that hopefully we can figure out what's going on. He starts attending school again the week of the 23rd so I definitely want to get this figured out and resolved before then.

Our M-F nurse is retiring so the agency is in a scramble trying to find a new replacement to attend school with him. One of the reasons some of our nurses are leaving is because he is getting more difficult to lift and carry. Even though he's only 41 pounds, he seems heavier because of his low tone. I'm starting physical therapy for myself to gain more strength and help with sore muscles. I'm impatiently waiting for the stairlift that we have been trying to get for months. The elevator company is not cooperating with DDA (development disabilities administration) with the required paperwork. It's very frustrating to sit on my hands and wait for this process.  

Autumn continues to enjoy school and the symphony. We are very proud of her accomplishments. She is also a wonderful sister and loves to snuggle up with her brother and play music for him. 

2015

January 1st 2015 marks my 39th birthday. Holding on to that age.....not ready for the big 4-0 yet. 

2014 treated us well. Autumn's health has improved greatly in areas I thought we would never get past. She is fast becoming a beautiful 13 year old. On New Years Eve she got braces! 

Isaac has had many adventures with school and zero adventures at the hospital. We qualified for the Medicaid waiver, which will benefit us in home modifications and other things. We also got to keep our current nursing hours. 

We are blessed beyond measure. Wishing you a happy and healthy 2015! 

December

It's Isaac's favorite time of year! He loves the movies, songs, lights and Santa Claus. Yes, he understands who he is by all of the "Santa Claus is coming to town" movies. As he approached Isaac his eyes got big and he gave Santa a big wave "hello." Here is our photo. 

Isaac has been well. We are adapting to home life without rushing to and from school. I was worried that he wouldn't have enough stimulation comparative to the school environment, but he's pretty happy and easily entertained just about anywhere. He enjoys having his teacher come over and do activities with him. 

Life has been extremely busy with Autumn's violin lessons, youth symphony, martial arts and homework. I don't know how we balance it all with Isaac. The youth symphony has been an amazing opportunity for her. 

We have also been busy searching for a new church for about 2 months now. The one we left we had been attending for 12 years. I miss some of the awesome people there, but for several reasons it was time for a change. We did start going to a church that has a really good youth program for Autumn. We are trying to decide if it will be our "home."

The next week will be filled with family and laughter. I hope everyone has a Merry Christmas! 

Colleen

Grandma Joe

This week my Grandma who is my Mom's Mom passed away. This is a picture of us when I was around 3 years old. 

Her and my Grandpa Joe would travel frequently all the way up from California to visit and get "sugar" from their great-grandchildren. She absolutely adored Isaac. 

Even in his NICU days they came up to see him. I'm still searching for those photos. I am very blessed to have known my Grandparents for so long on both sides of my family. 

Isaac is doing well and this is his last week of school as we will stay home during the winter. It will be nice to not have to transport so much in the mornings. I am looking forward to that. 

Halloween and The Sickies

Isaac had fun being a pirate for Halloween. I also made him a pretend ship out of a cardboard box. I could tell he knew something was up with the attention he got and of course me snapping pics all the time. Well that would be any other day as I'm always taking pictures of him.  He greeted the trick or treaters with the nurse and we went to a few neighbors houses. 

Then we took Autumn and her friend out to dinner and roller skating. Somebody is growing up so we are getting more creative about our activities. 

Since then Isaac has been sick with what I suspect is a bad virus, but with him it's never JUST a virus. He had a fever for a couple of days and then increased oxygen needs and lots of congested. It's been a rough few days. I have a headache. 

We are planning for him to return to the home based school and therapy program by December 1st. This will hopefully get him away from the germies for awhile until spring. I'm torn by this as he REALLY enjoys going to school, but his health is at risk too. 

October

It's been almost a month now since posting. Since then, Isaac got a tracheitis illness and needed oxygen and more suctioning. He's been on antibiotics and nebulizer treatments for about a week and a half now. I'm surprised it took this long to get an illness with school and all.  He's doing really well now and handling the 3 full days of school. He definitely needs the 4 days off to recover. By then he is very tired. It's so cute to see how excited he acts in the car when he knows we are going to school. The staff there is wonderful and I couldn't ask for a better environment for him.

Autumn just celebrated her 13th birthday! We had a 1980's theme and the basement was decorated in black lights. It was fun and her girlfriends LOVED it.  We had a contest to see who dressed the most like the 1980's and a scavenger hunt to find 1980's stuff.

I still can't believe I'm a Mom to a teenager, but I have to say we have done well so far. She is an extraordinary kid! We are getting excited for her first concert with the youth symphony. It has been a wonderful experience of growth and learning with the violin.

Busy

It's been very busy here at the Grove house. First Autumn had her audition for the youth symphony and got accepted! She is very excited about this opportunity. However life just got much busier with rehearsals, concerts, outfits and fundraisers. 

Isaac is really enjoying school and we added another day so he is going 3 days a week now. He gets pretty tired after school and usually naps on the couch or hangs out with his glow worm. So far he is handling it well. 

Back To School

Yesterday both kids went back to school. First let me tell you about my mornings. At around 7:20 I pick up my nephew who is only 2 months younger than Autumn. Carpool usually looks like this. Total craziness. 

When I get home at 8am the nurse and I are packing up to take Isaac and his gear to his school. It takes about 12 minutes to get there. The school is a total zoo. By the way did I mention there are only 2 handicapped spots in the parking lot and they are usually taken? 

Anyway Autumn is loving 7th grade already. She has mostly male teachers who are fun. 

Isaac went to his first EVER full day of school. He did well. He was pretty tired as expected the rest of the day. We are only doing Mondays and Wednesdays right now and will probably add a 3rd day. 

It's nice to be back to a schedule again. Happy pre-fall. 

Taking Risks

Sorry it's been awhile again:) we have been busy in a good way. Isaac has been on many small adventures lately in the "vimo."

We enjoyed walking around Manito a couple weeks ago and the Japanese gardens. Sister is such a good helper. 

Then we went to Riverfront to watch the Jr. Symphony. Isaac loves music. By the way Autumn's audition for the symphony is coming up on September 5th. She is so excited and nervous! 

This week we went up to Green Bluff with my Mom and he got to see the goats and sheep. Also, we let him play in the pea box, which was a HUGE risk because of the trach, but we did it anyway and he enjoyed it! 

Speaking of taking huge risks, we are in the process of trying out a couple of full days of school this fall instead of several half days. Since he gets tired easily this could be very challenging. It's worth a try though. Also, our annual nursing review was yesterday and they kept our hours! The best part is there is a policy where the school hours are seperate than the home hours and the district will pay for the school hours. That's probably the best news I've heard all year! 

Update

Sorry it's been awhile. It's so much easier to post on "Isaac Grove's Journey" on Facebook so I don't get a chance to post here as much. We are having a wonderful summer. School can hold off a little longer. Not looking forward to all that craziness. We took little man to a large party over the weekend and he had fun getting lots of attention. We also got to show off our new wheelchair van. 

Also, I'm officially getting old as I just attended my 20th class reunion. It's always fun to get out and spend time with Sam without the kids. 

Isaac had a few appointments recently. The eye Dr wants to put another balloon in his tear ducts and then there are some future tests with urology that have been brought up. Both would require anesthesia. Both are not very pressing to me and quite honestly why rock the boat? I used to think I had to schedule these things because I would be a bad parent if I didn't, but now I know that sometimes less is better. Right? 

With school approaching the Pulmonologist is running an immunology test 1 month after having the Pneumovax shot. Of course he didn't even flinch. He's so tough. The Dr still wants him to go 1/2 a day this upcoming school year and I'm ok with that. Also, the end of August is our annual review to see if we still qualify for our current nursing hours. These always make me nervous. 

Autumn has been practicing her heart out lately and taking lessons. Her goal is to join the youth symphony this year. She has to audition in September and they don't make it easy. Isaac has enjoyed many home concerts this summer. He loves it!