Sorry it took me so long to update. I've been frazzled lately due a hospital error that was made during this last stay. I would rather not go into it right now or my blood pressure might go up. I have spent most of the afternoon typing up a letter to the nurse manager.
Isaac got home yesterday afternoon and is doing good. His lungs are really not that great, but nothing we can't deal with here at home. They never really found out what was causing the fever or high heart rate, but they sent him home on antibiotics.....he hasn't had a fever since. We are planning on making the most of Easter with the little man. My mother-in-law Carolyn just had knee surgery, so she will be spending Easter in a rehab facility. We were visiting her and Isaac in the hospital at the same time! She's had a rough road lately so please keep her in your thoughts and prayers.
Have a wonderful weekend and a Happy Easter!!
So my Husband and Daughter are staying at a condo on the beach in south Texas right now. What am I doing? Isaac is teething which makes life super fun and to top it off, he has the runs from the antibiotics he's been on. I know, I know, I really know how to have a screeeaming good time. I'm happy for them, especially for my daughter as she is having a great time with her Dad visiting family down there. They are fishing and swimming in the hot Texas sun.
I sure miss them. ):
Isaac saw the pulmonologist and he's not totally out of the woods yet, so he's on another round of those fun antibiotics. I will just have to stock up on rash creams! I'm a little discouraged, to say the least about the oxygen. We were down to room air and then the little stinker gets sick! I just feel like we are always taking two steps back just when we are starting to move forward. Anyhow, next week he is getting another immune test done since the last one said his levels were low. If this one is low again, they said we may have to do further testing in Seattle! This could determine whether he may need intravenous immunoglobulin I hope this isn't the case. As you know, taking him to the nearest doctor is an ordeal, but Seattle?
-Colleen
It's almost Friday the 13th and you know what that means, don't you? Isaac's 2nd birthday is 1 month away!! Our sweet baby came into the world on Friday, April the 13th 2007. Since then Isaac has taken many baby steps. One of our biggest goals for him before he turned 1 years old was to have him smile and recognize us. Most parent's hope to have their children walking, talking and eating finger foods by then. Not us, we wanted interaction, not to mention less hospital stays! When he looked directly at me and smiled big around 9 months old that was huge. Now even though he can't verbalize much, when he's feeling well he has a lot to give and he's being more intent on signing bye bye, hi, mama and food.
Ok, so I admit, I'm only human and when I think of how delayed he is at almost 2 years old it is discouraging. Like most mom's with special needs kids I struggle with the what if's, but I have to remember that Isaac is going to do what Isaac is going to do in Isaac's time and we will take what we can get!
His lungs are still questionable due to head colds and teething. I had the date wrong on Isaac's pulmonology appointment and I was soooo glad because of the snow and the 9 degree weather we were having! It's not fun, let me tell ya having to drive a medically fragile child around town in the ice and snow. We will go this Monday, it should warm up to 50 degrees by then. Then maybe we can finally welcome spring! Yay!
Colleen
Thanks for the prayers! As you can see Isaac is feeling a little better and is dancing in his Johnny Jumper. Everyone should be able to dance, even if they can't walk! Since adding Prednisone (an oral steroid) to our bag of tricks, Isaac's lungs are better and he needs less oxygen.
Today I am thankful for:
Daylight Savings Time, even though I needed a strong Americano from Starbucks in order to function.
Sam and Isaac are looking pretty cozy watching NASCAR races together.
An awesome staff of home nurses!
Please pray for:
Wisdom on if we should sell and buy another duplex for a better school district for Autumn and an ideal place for Isaac's special needs.
Tuesday's Pulmonology appointment. That we get a bill of health to allow Isaac to phase into therapy at the center this summer.
I added a list of courageous kids to my site (email subscribers click on the subject to see the whole blog). These are kids I pray and think about every week. Not only are these kids brave, but the mom's are an inspiration too!
Colleen
It's Tuesday night as I type and Isaac has been keeping me on my toes today. Both of his lungs are wheezy and the nebulizer treatments are not quite doing the trick. I think he may have caught a cold from me, which has turned into junky lungs. He must know that it has been almost 6 months since our last admit to the hospital.(September) I am going to call pulmonology tomorrow to see what else we can add to our bag of tricks here at home and hopefully we can stay away from there. Lil stinker is otherwise gleaming with smiles and laughing at Mom's funny sounds as usual. He laughs at me when I sip my coffee because he thinks the sound is so funny. Now all I have to do is sip my usual afternoon decaf and he starts to giggle. Silly guy! Autumn has been keeping me on my toes too. She is an otherwise healthy kid, but she was born with reflux in her urine and is very prone to bladder infections. Well the past 2 months we've been struggling with this and had to go in frequently to get her urine tested. She has an appointment next month with the Urologist to get this checked out. Isaac's lil friend Gabby continues to be in and out of the hospital for pneumonia and infections and I am sending a prayer up for them. Well I better go to bed!
No Isaac is not up and running, my computer is! It's been down for over a week and now and anyone who knows me well knows how much I enjoy my beloved computer. So what's a girl to do with her time? Did I really think that by taking a little break from cyberland I would instantly have more time?.....yeah right!! Shortly before our weekend trip Isaac started cutting 2 teeth and has had more secretions, which usually means more oxygen and also more suctioning. He's doing better today than last week as he decided to scare the nurse on the Saturday while we were gone by dropping his sats (oxygen) levels. I think he was just to making sure she was paying attention or maybe he just missed us or both. That's ok, I have been actually enjoying spending extra time with him as we are making up for the nursing hours we used up for our trip. In my spare ME time I have been reading a book called "Captivating" that was inspired the women's ministry at my church. I attend a Thursday morning group called "Becoming Women Of Grace" with some really amazing women who have become like a 2nd family to me, especially since Isaac has been born. Anyway Isaac's speech therapist suggested taking photos of items, people, toys around the house and using them as flashcards to form communicating in addition to the sign language. It's so cute to see how excited he gets when he looks at these pictures. In the photo Autumn is being a good sister lately and wants to have cozy time with her brother in the rocking chair. They snuggle up together and watch movies, (well Isaac usually falls asleep) it's so cute. The other photo is of him with his most favorite snuggle up toy, his glow worm. He loves to hug it. Such a loveable little guy!
Well it's just a lazy day here . My daughter Autumn went to teakwondo with her Dad this morning and now she's playing with her neighbor friends. Isaac's taking a long nap and I'm catching up on the laundry. Sam (my husband) is playing a new video game on his playstation 3. He's my other kid..LOL. So what comes next for little Isaac? This Tuesday Isaac has a Neurology appointment and then on Friday, Feb. 6th he has a follow up appointment with the ENT. The follow up appointment is for the procedure he had done a couple of weeks ago to replace his right ear tube. I'm sure the doc will also want to talk to me about his hearing test too, which I'm kind-of not looking forward to. In March we will we will be seeing the Pulmonologist, Endocrinologist and the Opthalmologist. April is still looking uneventful other than a trip over to Shriners Hospital. The Pulmonologist wants to start weaning Isaac off of his diuretic meds in the spring. He started taking this because he had severe edema last April that caused him to gain as much as 8 ounces a day of fluid! Since Isaac has a rare chromosome disorder and is a mystery, the doctors really couldn't figure out what was wrong with him, so they diagnosed him with Lymphedema. Well thank goodness the diuretic worked for him and he lost all of the fluid, poor little guy, looked like a water balloon for awhile. Lynn, my home nurse also gives him a head to toe massage everyday to keep the fluid circulating out of his body(yes, he is very spoiled.) Anyway, weaning him off these meds is going to be a process, but he will hopefully do just fine.Isaac continues to do very well on his oxygen levels and is staying infection and pneumonia free, which is amazing for this time of year! I have been exploring the option of possibly transitioning him towards the spring and summer months from home therapy to attending the center at the Guild School. This would be great for Isaac, but especially good for me as it will be a good outlet for us. Isaac is limited to only 6 therapy sessions per month while recieving home therapy. This includes PT and ST. If we were able to attend the center he would have more options. This of course is only something I am considering and the doctors will have to say that Isaac is well enough or not too medically fragile to phase into this, So we will see what happens. Have a Great Week! Love, Colleen
Sorry it took me so long to update. I've been frazzled lately due a hospital error that was made during this last stay. I would rather not go into it right now or my blood pressure might go up. I have spent most of the afternoon typing up a letter to the nurse manager. 
