Her new "Do"

Lately, Mikaela will not leave the hearing aids alone. Unless I am sitting with her and occupying her with toys and redirecting her hand, she is pulling at them constantly. Even more so when she is tired. Let's say she is in the 'neglect-o-sphere' (1), aka exersaucer, and I run in the kitchen to stir the sauce, all I hear is that lovely high-pitched squealing feedback. Then I run back in the family room, pop it back in her ear and the whole thing repeats every 45 seconds or so.

She also found her barrettes. They don't last either. The challenge with them is no lovely high-pitched squealing feedback to let you know that it has been removed and making it's way into her mouth - as all things do with a 9 month old. So after about 3 days and 6 heart attacks when I cannot locate the barrette for several minutes, I tried the small, clear, ouchless rubber bands. No success there either!

I have too many other things to have heart attacks over, so Mikaela has a new do! No longer are barrettes required to keep her hair out of her eyes. I hope you all like it!

Oh....I also have found a remedy for the hearing aid issue....a pilot cap! I will post that picture after nap time!

Footnotes:

(1) The term "neglect-o-sphere" was shared with me by our friend Meredith P.

Upper GI Results

So we get to CHOP on time, but of course I couldn't remember where we were supposed to go. I went to the Wood Center and we were supposed to be in the Main hospital. Anyway, all was well and we were still on time by the time we made it to the right department.

Juliana couldn't be in the room of course because of the radiation exposure, so she and Daddy waited in the hall.

Mikaela hated the whole ordeal! Who likes it? She cried as soon as the technician pulled her arms over her head let alone when he began feeding her the barium. They snapped a bunch of pictures, rolled her this way and that. Snapped a bunch more. Asked me to hold her for a while to calm her down and see if the barium would start to work its way down. Then back to the table again for more pictures. This time she cried as soon as I laid her down. More turning and rolling. Right side, back to her back, then left, then right again. More pictures.

They asked me to hold her again while they gave a quick call to her surgeon that did her Ladd procedure. In about two minutes, they were back in the room for a few more pictures.

All in all, everything looks "good". Her stomach was a bit distended and had some air. The barium flowed a bit slower than the radiologist would have liked, but attributed all of the above to her being so upset that she swallowed some air and the flow slows down because when one is upset the stomach clamps down a bit.

So we know only that nothing serious is wrong. We know that the intestines look okay. Everything is behaving "typically". (Thanks, Kim for this word). We don't really know why she is unable to eat baby food yet and periodically vomits all that she eats. It's a waiting game.

As long as her weight gain is good and growth is good, we ride it out!

Vacation was a blast

The week was really very nice! The weather was perfect, the kids had fun, Kurt made lots of sand sculptures - all in all a success.

Except for one little thing...Mikeala threw up again Tuesday night! That's it! I am scheduling a GI work up. I don't understand! This is not 'normal'.

Called CHOP on Wednesday and we have an appointment Monday, July 21st.

More GI Stuff

7/12/08 We rented a house again this year in Ocean City NJ - on the beach! It should be GREAT! Juliana loves playing in the sand, playing "chase" with the waves and going to the boardwalk. Last year was so much fun - even with me being pregnant. This year will obviously be a bit different since Mikaela is so young and napping twice a day. I forsee a lot of time in the house and not so much on the beach for me.

So our plan was to get out of our house by 1 or 2 since Mikaela usually naps from 2-4 and would hopefully sleep in the car on the way down. Didn't happen! We were still packing up at 2, so I put her to bed in her swing so Daddy could take apart the crib to pack it. (For those of you who don't know, she sleeps on an incline due to the acid reflux.) I tried having her sleep flat the week before to see if I could just bring the Pack and Play, but no....the reflux got worse. We decided to bring her crib! We were ready to leave by 5 and I woke Mikaela from her nap. Kurt made a suggestion about heading down first and I would stay back to feed Mikaela. He would have his car unloaded and the crib set up by the time I would arrive. Sounded like a plan! He took off.

Juliana, Mikaela and I were sitting on the couch as I started to feed her. At first, she didn't want to eat. Hmmm....maybe she wasn't fully awake yet. I waited a bit. She burped. Ah, that explains it - or so I thought. Now she wanted the bottle. As I was giving her the first 2 ounces, I thought maybe I would stop at 4. That would be enough to hold her until we got to the shore. I would then feed her the rest there. At two ounces, got the burp... all is well. Gave her the next 2 ounces....no burp! We worked on it for 20 minutes and still nothing. Well, I could always pull over if she got fussy. Let's just go!

She's in the carseat, we are outside, Juliana is getting in her seat and as I was lifting Mikaela into the van she started vomitting! NO! Not AGAIN! Back into the house. She and the carseat were covered! Oh, man! I really wish Kurt was here to help! I needed a towel. The carseat has to be taken apart and washed. I couldn't do anything but just held her over the kitchen sink. These episodes usually take 45 minutes until she brings everything up. Then she usually sleeps for a while. Then when she wakes up I usually give Pedialyte to rehydrate her. Ugh...who could I call for help? Jill next door....no answer. Andrea...ugh! She's at Conference! Lonna...I know she lives a bit away, but maybe....no answer! My other neighbor Anni....ringing, ringing....Mark answered. Anni was still at work, but would be home in 15 minutes. Sure, just what she wanted to do after work, help me with puke! I said, "if she feels like it, can she come help? If she didn't I completely understand!" No one left to call.

So I took of the puke soaked onsie, wrapped her it two kitchen towels and just waited over the sink for the next wave to come. Yep! Lots more came. Not to be too descriptive here, but it had a lot of mucus in it. No bile though. My nerves!

The doorbell rings. It was Mark and his mom!! They were here to help. What great people! He took the carseat completely apart and scrubbed it out. His mom was so caring and nice - wanting to do anything she could. Mikeala threw up two more times and then fell asleep. I laid her inclined on the boppy Nicole loaned me so she could be somewhat inclined. Remember, the crib is on the way to the shore! She slept for about 20 mintues. When she awoke, she burped and I could tell she was quite hungry. I opted to give her a bath. Normally I would be giving her the Pedialyte, but it was on the way to the shore with the crib! I guess we would have to try the formula.

Go slowly!!! It was 8:30 when I started to feed her. I was very nervous! She took 2 ounces and burped....a couple of times actually! Yay! Two more ounces and a few more burps! Woo, hoo! Who would have thought someone could get so excited over dry burps! It is a reason to celebrate in our house! However, I decided that was enough to eat for now. We could always eat more later.

We finally left at 9:45 or so. Unbelievable! Juliana was such a trouper through it all! On the way down, Mikeala was not very happy. We pulled over at the Farley rest stop and I took her out for another burp. Yep! Got it after about 5 minutes standing in a well lit, heavily occupied area of the parking lot!

We arrived close to 11 p.m. and I felt like a dishrag! What a start to the vacation!

Official Hearing Test Results

Okay...this is gonna be tricky to explain this in writing. Much easier to do it in person. Bear with me.

I tried to upload her audiogram but it is a .pdf file and it is saying I can't do that through Blogspot. I have to do more research. I am certain there must be a way....but don't know at this time.

So, to do this with out visual aid will be event more challenging.

With her hearing aids, Mikaela responds to sound in the 35-40 decibel loss at 500 Hz. Then at 1000 she is at 40-45 decibel loss. It drops off steeply at 2000 Hz to 75-80 decibel loss. The audiogram doesn't show any response at the higher freqencies i.e. 4000 or 8000.

To attempt to share which sounds in the English language she may be hearing based on this test, they are as follows:

j, m, d, b, l, a, n, o, ng, r, e, i, u

The sounds she most likely is not hearing:

p, h, g, k, ch, sh, f, s, th

For example, her name, Mikaela, to her probably sounds like Mi-ay-la. No legible 'k'. Thus why deaf people miss sounds and parts of words when they speak. They don't hear them. How can you repeat what you didn't hear? (This is not taking into account years of torturous speech therapy.)

Digestive Situation Update

Most of you know that Friday, June 27th, Mikaela threw up again in the morning. Our insurance company (United Health Care) has a 24 hour nurse line. I called it months ago and ever since, we have been in contact quite regularly with "our nurse". Her name is Christine. On Monday, June 30th, she just happened to call to check in with us. I explained about the vomiting and my theories on her slow developing GI system. She immediately asked me how she was doing with sitting unassisted. I said actually, the week of June 16th she was sitting for only 3-5 seconds without support. However this week, she was up to like three minutes!! (I am thrilled, by the way, for the progress in her core strength!!!) Christine said that core strength i.e. sitting unassisted and the digestive track mature at the same time. So, an indicator that a baby is ready to begin cereal or stage one jar food is that she can sit up by herself for a spell. Well, who knew???? I mean I know that it says stuff about keeping baby in an upright position to make swallowing easier, but I never knew about the parallel development.

I have also learned through Mikaela's hearing loss that the ears and the kidneys develop simultaneously. Just sharing for giggles!

So, because she is really sitting up well, I am hopeful that in August, I can start foods again!