Not a whole lot happening here at Carleigh Central. We did find that the correct spelling for our newest discovery about Carleigh is laryngomalacia. She is still taking Zantac for the laryngomalacia. We have noticed that it really acts up at night and early in the morning. I guess that makes sense. There are a lot of nights that I go to bed not feeling well and then in the mornings I wake up with a scratchy throat or stuffed up. The laryngomalacia really aggravates Carleigh. She will be breathing along just doing fine and then start screaming. She is getting so used to it that she can catch herself before she even turns purple! I feel she is doing so much better than she was. We bought her a "Teeny Weeny Boppy", which is a round thing that can go around her neck. Usually they are used for children 18 months and younger in their car seats. When they fall asleep, the Boppy keeps their head from falling forward or to the sides. We use the Boppy as a little neck roll for Carleigh. When her neck is positioned a certain way, her snoring stops and her laryngomalacia doesn't act up. We bought Carleigh's first swim suit this weekend! She is going to look like a little ballerina. It looks more like a ballerina dress than a swimsuit! It's pink with three little white roses on it. We have a little pool for B, so I'm sure Carleigh will enjoy "swimming" with him. We are not going to immerse her totally, just hands and feet, but I wanted her to look all "official" and be in a swimsuit. :o) This will be a busy week. Tuesday we go to the pediatrician and to the geneticist clinic. On Thursday we have an orthopedic appointment to check out her hip and her feet. We were supposed to have Spina Bifida Clinic on Wednesday, but we're not really sure about it. I have to call tomorrow. We also have Parents As Teachers scheduled for Wednesday AND we are supposed to start therapy (Physical, Occupational, and Speech) sometime soon. I'll post more Tuesday night after our appointments. Oh, we ended up in the Emergency Room again! This time it was for B, not Carleigh!! B is now the proud owner of two stitches IN HIS FACE! He fell and hit his face (about ½ inch from his eye at the top of his cheekbone) on the edge of a step. His stitches will be removed on Tuesday, when Carleigh sees the pediatrician.

We're home from the hospital. Carleigh has larengo malacia. There are little flaps around her voice box that sometimes "flip" up when she breathes in. They go over her voice box and keep her oxygen from getting to her lungs. That is why she has been turning purple at times.

The ENT specialist said that reflux can cause it to be worse. I told him she wasn't vomiting, but he said she probably still has reflux, only it's the kind where her stomach acid moves backward up her esophagus. She has been put on Zantac to try to control the reflux. If the Zantac doesn't work, we will have to look into surgery. There is a laser surgery that can be done, but it requires general anesthesia, and we all know how Carleigh responds to that!

The other surgery is a tracheotomy (sp?) that can be done under local anesthesia. I cannot even imagine Carleigh getting a tracheotomy! It is the absolute last resort - even the ENT said so. We are praying that the Zantac works. We are also trying different kinds of positioning to open her airway more, which sometimes includes sleeping on her stomach. Good thing we have an apnea monitor!! I'm very afraid of SIDS!

Carleigh has gained more weight! This morning she was a whopping 8 lbs. 10 ozs.!! I had her reweighed before we left because at the first check, she had some wires stuck on her. Without the wires she was 8 lbs. 7 ozs., which is still a gain. We wanted to know an accurate weight so when we go to the pediatrician next week we can tell her the 8 lbs. 10 oz. was the result of cheating with a few wires. :o)

Since coming home from the hospital, Carleigh has not faired too well at times. She still has so much congestion and runny gunk in her that it's hard for her to suck her formula through the bottle. I have kept her on Pedialyte to keep fluids in her and yesterday I called the doctor. She is now on breathing treatments. We have a nebulizer and her medicine is called Xopenex. It is supposed to have fewer side effects than Albuterol. She has a treatment every 3 to 4 hours as needed. It is helping already. The congestion is starting to break up some and she is back to drinking her Enfamil again. She often scares me to death with all of her little tricks that she does.

I found out that there is a special growth chart for Trisomy 18 babies. Our pediatrician has been using the regular chart, which Carleigh is still under the 5th percentile on it. On the T18 chart, Carleigh is a WHOPPING 50th percentile!!! I am so excited that she is doing well in comparison to her T18 friends. :o)

I have recently joined a Trisomy mailing list. I "met" a family who had Baby Noah the same day as Carleigh was born. Noah got his wings and flew off to Heaven just eight days after he was born. We know he is smiling down on Carleigh right now.

It's past midnight, so I didn't get here soon enough to update on Carleigh's two month birthday! I missed it by a whole 20 minutes!

Carleigh doesn't care though, she enjoyed her "little" birthday today. I had gotten her some long-sleeved onesies. Since it's warm in the house I let her wear one without pants over it. She liked having bare legs! I even took her socks off too! LOL

She just looked around with the biggest brightest blue eyes I've seen in awhile. Speaking of eyes, Carleigh is back on Tobramycin. She has those dreaded "eye gunkies" again. This time she minds the drops though. She's almost figured out that when she sees the dropper coming to close her eyes. With 17 more doses to go, I think she will be challenging us before they are all given!

Also, I forgot to mention that the pediatrician said we can feed her whenever she wants up to 60 ccs. (2 ounces) eight times a day.

Currently at this minute, she is WIDE awake with no intentions of sleeping anytime soon. Her brother is watching a Maisy video. What a couple of night owls!! :o)

What a day! Last night Carleigh began IV infusion antibiotics. (Rocephin)

Yesterday morning she surprised me with "diaper yuckies" that had run up into her Spina Bifida lesion. Our problem was that no one in our area would provide IV therapy to a baby.

Our case worker through our insurance arranged for us to live at the Ronald McDonald House for 5 days so Carleigh could receive her medicine. After some fast and furious packing, we arrived at the House. We played "phone tag" most of the day and eventually talked to the nurse who was going to administer the medication. As it turned out, WE are the ones that are administering her medication!! It's such a simple job that she taught us how and we got to come back home. I told John we were turning into qualified nurses! :o)

Carleigh also has had "eye gunkies". She had the problem since birth. In fact, we thought she was unable to open her right eye and it turned out that it was just sealed shut with the "gunkies!" She is now on eye drops (Tobramycin) to clear that up.

Mommy will sure be glad when the "diaper yuckies" and "eye gunkies" are gone!!