Look what I found this morning

when I went into Randy's room.
I'm not talking about him covering his face (he was actually crying because I took too long to get to him); I am talking about the fact that he is sitting up! He went from laying to sitting all by himself.

I have not witnessed him doing this by himself yet, but we have been working on it so hard in therapy and practicing at home. Maybe the Kinesio (sp?) tape helped.

His PT taped his tummy. She said this would keep the muscle in place and help build strength. He really did not mind it much; I just had to keep a onsie on him so he wouldn't take it off. I'll have to let her know what he did on Monday and maybe she will tape him again.

I'm done with the dairy products....

I don't care what the allergy testing says. I have tried on three occasions to give Randy dairy; once before the testing and twice after the testing. Each time I give dairy to him he vomits for the rest of the day and gets fine bumps on his cheek.

Now I need to decide should I try soy products? rice products? goat products?

Eye/Vision Update

Randy had a follow up appointment with the ophthalmologist today. As usual, the orthoptist performed and eye exam. She shined lights in his eyes and watched his tracking. She asked me about his behavior while he was patched. I told her that his movements were more "infantile" while he was patched.

I brought DVD's of some of his MRI's and the ophthalmologist reviewed them. He wanted to see if he could get a good look at the optic nerve. Damage to this nerve can be an indication of his vision loss. When he entered I asked him what he saw. He said "Oh I could see the optic nerve some". I then asked if there was severe damage to it. He replied, "not severe". I finally had to ask him was he keeping something from me. I told him I can handle whatever it is. He assured me that he was telling me all he knew. He also said that the damage is not a direct indication as to the level of vision Randy will have. He said we will just have to keep treating him and we will have a better indication when he is older. I dropped the subject, but I still feel like he had speculations that he was not sharing with me.

As you can see from the pictures, his right eye wanders. This is a result if his strabismus. The bad part is that when it wanders, he is essentially "turning it off". If he turns it off long enough, he will essentially lose vision in this eye.

The patching forces him to use this wandering eye, thus preserving the vision in this eye. So he upped the patching time from 2 hours to 4 hours. I have to bring him back in 3 months for a full eye exam with dilation and everything. This is a 2-3 hour visit.

I did ask him about the future treatment plans for Randy's vision. He said we are patching now to save and maximize his vision. When he is older, we will pursue eye muscle surgery to straighten the eyes. He said this surgery is not as effective at such a young age. And since Randy has other neurological issues, his success rate with the surgery drops from 80% to 50%.

So right now I will continue patching.

Tests and tubes

Randy has completed all his follow up tests from his last visit at the feeding team. They were pretty pleased with his weight gain and his eating, but not happy with his milk intake. The GI wanted to rule out any medical reasons for why he was not tolerating his bottle. He ordered a video swallow study and and EGD.

The video swallow basically took a picture as he ate puffs, purees, and drank some milk. They added some barium to these items so that it would show up on the x-ray. He did a good job, except with the bottles. He gobbled the items (he was starving because he had not eaten in 5 hours) and they went down well. He refused his bottle, so we had to use an open cup. The test showed that he had delayed swallowing with the thin liquids. He definitely refluxed, but did not aspirate. Aspirate is when you reflux and it goes into your lungs. The speech therapist said he protected his airway at all times.

The EGD took a picture of his throat, esophagus, stomach, and small intestine. He had to undergo anesthesia for this test. They took a camera hooked to a scope and put it down his throat while they took pictures. They also took some specimens of each of these areas and will send them to the lab. He wants to make sure all is well since he is well over a year and still suffering from reflux. The camera showed that all the areas looked good; that is a good indication that the Prevacid is doing a good job of protecting his body from the acid.

He also received ear tubes while he was under the anesthesia. The procedure was sooooo quick. Both procedures were done in less than 30 minutes. I am glad I went through with the tubes. The first ENT wanted to "wait and see". I did not feel comfortable with this because he had already failed three hearing screenings and I felt it was impacting his bottle feeding. The first ENT felt that it was totally unrelated to his bottle.

The ENT from the feeding team felt that the fluid in his ears could be impacting his bottle feeding and was not ok with his hearing being affected during this time of crucial speech development. He said that there was lots of fluid behind the ear and he drained them well before inserting the tubes. He was kind enough to let us get our ear check with our pediatrician in three weeks since we already have an appointment. This saves us an hour drive. If there is a problem, we are to call him though.

He is recovering wonderfully. He has eaten twice and taken a small milk and juice bottle. BTW, the children's hospital where we go lets you buy a bottle of Tylenol for $1 if your child was seen there or being discharged. You can get up to two bottles. Isn't that cool?!

Pity party

I cannot seem to get it together. That shunt malfunction last month just blew my mind. This latest shunt revision was exactly one year from his first shunt revision. I am so fearful that summer and fall of 2009 will be a repeat if 2008. I don't know if I can take another fall like last year. Randy was hospitalized 7 times and was operated on 10+ times. He had been doing so good; he had not had a revision since September 22, 2008. I did not even see the signs; I had no idea his shunt was failing..... I feel like the other shoe just dropped.

I keep questioning "why my baby". Not necessarily the prematurity; I know quite a few people with preemies, even micropreemies. But why did my baby have to suffer brain damage? My two close friends and my cousin had preemies over 18 years ago, 28 week twins and a 29 weeker, and their children came through with flying colors. My cousin had a 29 weeker; nothing more than mild ADD. My friends daughter just recently had a 24 weeker; no brain bleeds for him either. I know that I should not question, but lately I can't seem to let it go.

I am just getting weary from worry. I don't know why I am worrying about things I cannot change, but I am. I am just flesh and you know it gets weak. And now I feel like I can't let my guard down. As soon as I do, something else will happen.

I'm tired of well meaning questions and comments from others. "Girl put him down and let him walk" (he can't). "I know he's all over the place" (umm...actually he's not). "Can he crawl" (no). "He'll probably just skip crawling" (really?). "What's wrong with his eyes" (none of your business). "Awwwww" (he does not need pity).

I know I sound like a total witch today. Forgive me and pray for me.

Enjoy a cute face after my grumpy post. Riding the boat at the zoo.