Saturday, December 20, 2008

Update on Nathan

Yesterday, before that major snow storm hit, I took Nathan up to Primary Children's for a couple of doctor visits. My neighbor, Carlee Hamrick, was awesome and watched Ellie for me so that I wouldn't have to deal with her during all of Nathan's tests. Poor Nathan is just like his older sister and mother. He gets carsick when taking longer drives. On the way to the hospital he threw up all over his clothes. The nissen doesn't seem to be functioning very well lately. His vomit amounts are starting to look like what you would expect to see out of Ellie; not a kid who shouldn't be able to throw up. I didn't bring any extra clothes with me, so I just wiped Nathan off the best I could and took him into the hospital.

Our first appointment was with the ENT, Dr. Park. Dr. Park is one of my favorite doctors of Nathan's. Nathan had to have another hearing test to see if his ear tubes were working properly. Nathan was having a hard time responding to the lower sounds at softer levels. He did however, pass the hearing test. He's going to be closely monitored so that he doesn't sustain any hearing loss. Dr. Park and I also discussed Nathan's bipap machine. While the results that came back from the titration study were not very favorable, it was still better than what his breathing had been before. Nathan is going to have a few studies done at home to test his oxygen levels with certain pressure points being forced through the machine and also without the extra breath that it forces Nathan to take if it doesn't feel that Nathan is getting enough oxygen. Also, Nathan's tonsils and adenoids are getting bigger. Combined with his severe sleep apnea, Dr. Park recommended that Nathan's tonsils and adenoids both be taken out. We will have to wait until after his cleft surgery because that will take a while to heal and will be too traumatic for Nathan to do it all at once. With the exception of the brain, I'm pretty sure that the doctors are running out of body parts located in the skull to operate on. Actually, Nathan's probably going to be missing teeth when they come in. He'll have to have a few operations for that problem too I'm sure!

We finished our appointment with Dr. Park and then went upstairs to see Dr. Hoffman, the eye doctor. I was glad that we could show up 45 minutes early to the appointment! They quickly got Nathan in to do the tests and such. Nathan was given some drops to force his eyes to dilate. Since he is very fair skinned, his eyes will probably be dilated for the next 2-3 days and we need to keep him from going outside as much as possible. It took about a half an hour for his eyes to dilate and then we were able to go in and see the doctor. He was glad that I had brought Nathan into to see him. Many children with Nathan's symptoms such as Pierre Robin (small recessed jaw), cleft palate, ear problems, and obstructive airway issues also have what is called Stickler's Syndrome. Leah Wheeler, one of my friends from band in high school had two babies born with this syndrome. Luckily, Nathan doesn't not have it. Stickler syndrome kids are extremely nearsighted and often go blind. Nathan is the opposite. He is extremely farsighted.

Hyperopia, also known as farsightedness, longsightedness or hypermetropia, is a defect of vision caused by an imperfection in the eye (often when the eyeball is too short or when the lens cannot become round enough), causing inability to focus on near objects, and in extreme cases causing a sufferer to be unable to focus on objects at any distance. As an object moves toward the eye, the eye must increase its power to keep the image in focus on the retina. If the power of the cornea and lens is insufficient, as in hyperopia, the image will appear blurred. Hyperopia, and restoring of vision with convex lens.

He has always had drainage issues out of his tear ducts. The doctor will perform surgery on that when Nathan is having his cleft surgery in February. He gave Nathan a prescription that we were told to take to the Moran Eye center next door. I did as I was told and we fitted Nathan for glasses. There were only three infant frames that could hold his type of lenses. Two of those frames were too little for his face! It was a hard choice at the point. He actually looks really cute with glasses on. Now keeping those darn things on him is going to be a trick...

I'm thinking that maybe I should take Ellie in to have her eyes checked too. I honestly thought that Nathan could see fine. As I thought about it, he doesn't look at books the way that Ellie used to around that age and whenever we are at Grandma and Grandpa's he always follows us around with his eyes while we are walking. Now tah dah! We know that he can really focus well on objects that are far away! Nathan's glasses will be here after the beginning of the year.

I'm really grateful that he's farsighted and that it doesn't look like for now that he's going to get progressively blind. I feel a little frustrated at times that every time I go to a new doctor's appointment lately that Nathan needs another procedure done, however, I understand that the doctors are being very proactive so that Nathan can develop as closely as possible to his other peers. He needs good eyes and ears to develop language and fine motor skills. He needs his cleft repaired for breathing and eating issues. The heart was pretty self explanatory and as much as I dislike having a baby with a button inserted into his stomach to eat with, Nathan would be having a hard time eating otherwise. I can't believe how much I took for granted having a normal healthy developing child. A healthy baby is truly a miracle and blessing.


Tiffany Moore said...

I hope that they can get all of the surgerys done soon. I am so amazed at the strength that Nathan has shown in his life. He has gone thru more in less than a year that most of us go thru in a life time. You are truly a insperation to me. Steph you are AMAZING! I know that I could not handle this as well as you have. Also if you need anything even a ear to listen I am here for you any time. We need to get together after the holidays.

Janice & Don said...

I can't wait to see him with his cute glasses in January. Brennan is so excited to see "his sister" Ellie. I'm sorry he's not been feeling well... his teeth will cut soon (I hope) and he'll be back to his sweet self soon.

Tammy said...

best holiday wishes! and good luck with the glasses! Tammy

Natalie Walker said...


I received the bottles you sent a little while ago and have been so slow in thanking you. THANK YOU. My son, Crew, is 3 months old and still unable to eat/drink by mouth but we're hoping he'll be able to soon and then those bottles will be wonderful. Your little Nathan sounds like an inspiration, as do you. It breaks my heart to hear of his trials. My son is considered to have Pierre Robin sequence - the micrognathia and a cleft palate. At one week of age we were able to do a lip-tongue adhesion surgery rather than doing jaw surgery as it sounds like you guys had to do. We just finished genetic testing to rule out Stickler syndrome and others which is a relief. I can't imagine you dealing with heart issues on top of the rest. I'm hoping to read over much of your blog to hear about Nathan's journey so far, if you don't mind. Our blog is (which isn't too detailed about Crew's condition) but I'd love to email or chat more about the procedures and options and your experiences that you have gone through.
Thanks again for the bottles.
p.s. my email is