Sunday, July 3, 2011

The long overdue update

It is time for a very long overdue update. I haven't been blogging for the past month. The reason? I have been struggling emotionally with everything going on with Josh and Kaitlyn. There are different reasons for both kids and I will explain. But I am doing better now and am ready to face everything and jump back in the game.

So I will start with the little Princess.

She is getting so big!! She is rolling all over now (finally) and we have begun to baby proof. She is still her happy smiling self, but a little more shy with strangers. Darn that Stranger Anxiety! She is still having major reflux problems. She had begun to see Josh's GI doctor, Molly O'Gorman. (We love her!) We did an upper GI fluoroscopy last week and it came back with normal anatomy and severe reflux. Both of which we knew. The mystery as to if she is aspirating is still not solved. But she has made huge improvements this past week. I tried trial runs off her oxygen while she is awake (haven't tried in almost 2 months) and she is doing awesome! So she is off the O2 while she is awake. She still has Apnea so we have her on it at night. We will be doing a sleep evaluation with her soon. We changed her formula to EleCare, the same formula Josh has been on in the past. She is still having some diarrhea problems, but doesn't seem to have any tummy aches anymore. So who knows.

So you might want to know why I have been having a hard time then. Well the reason is plain and simple. Kaitlyn is eerily similar to Josh. She is having very similar feeding issues and behind in her development. The GI doctors (and yes I say doctors since 2nd opinions were involved) thinks she might have Mild CP. (Cerebral Palsy). I don't think so, but she does have the same tone problems Josh has. She is stiff alot and not very fluid in her movements. She is really jerky and uncoordinated. Josh still had more problems than her at this age, but what problems she has is the same variation as Josh. It has been hard to take in because I know how hard things have been for Josh. I don't want that for her. I wanted things to be different. Obviously there is something genetic going on here now that 2 kids are involved. I don't know where we are doing with this right now. I am a bit overwhelmed. She is waiting to get a Feeding evaluation with the rehab from Primary Children's right now. She is also going to have an eval and start therapy with Early Intervention in a couple weeks. It had been harder for me this time around to accept that things might not be going the way I envisioned. She is a sweet baby though and incredibly happy.

(This picture is from the last time we attempted to eat solids)

Now onto the Birthday Boy!!

Josh turned 4 on June 1st. I can't believe it has been 4 years since he joined our family. Time sure does fly.

He is getting so old now! He definitely is growing out of that Toddler stage, even with his developmental delays. He wants to do older things now even though for the most part he can't. He is still as obsessed as ever with cars and trucks. We are still really struggling with his liquid oral intake  and even most days lately his oral food intake as well. We run his pump with water on him almost 24/7 to keep his system working. If we stop, even for a few hours, it reeks havoc on his body. He has been still having some major balance issues and all around neurological concerns. He does see his neurologist this coming tuesday so I hope to get something new to do. He also decided to be naughty a couple weeks ago and pulled out his tube during the night. By morning his hole was closed up and therefore earned himself a trip to the ER at Primary Childrens. It was very traumatic and I won't go into details on how they open the hole back up in case you are squeamish. Let's just hope he doesn't do that again. Also he had surgery this past monday to have permanent ear tubes put in. He did really well this time around with the two anti-nausea meds given before he woke up, he didn't have to stay all day. He also didn't have Versed which is what we think was the culprit for all the problems last time.

Finally I will leave you with a couple pictures of his birthday. He got a big dump truck, a big Mator and some cars from us. He was in heaven.

(I had to include a picture of his cake for my family who asked me to take pictures.)


Ranee said...

Hello! We don't know each other, but I stumbled onto your blog tonight and just wanted to give a "Shout Out!" to a fellow "special needs mom!" We have LOTS of special needs at our house, between our 5 kiddo's, including but not limited to:
3 kiddo's with Cerebral Palsy
2 G-tube fed kiddo's (FTT and reflux)
1 kiddo' who has Autism
1 who has Gastroparesis
2 who have genetic disorders
and 1 who will likely receive a diagnosis of a cognitive delay soon.
It's not often I hear of or see someone else who "get's it!" :0)
Sending blessings your way,
Ranee Hansen (pronounced "Rainy")

Brittany said...

Hang in there. You'll do great.

Jacob & Angie said...

I am like Ranee, the last one that posted. I came across your blog through a friend of mine. I have a special needs daughter about he same age as your Josh. She has Retts Syndrome. She has developmental delays, low muscle tone, does not walk or talk. But she has a spirit that moves mountains. My heart goes out to you to be going through an emotional roller coaster twice. But hang in there! You inspire me to be a better mom!