Happy Dance

Time to break out your best happy dance. Yesterday at Amelia's pulmonology appointment, the doctor told us that the pressures on her echo looked good and they were within the normal range. In other words, her pulmonary hypertension has resolved! This is a tremendous weight off my mind. Another health goal met! However, we will still be keeping her on her meds. They are very low dose for her weight and he will keep her on them until she is off the oxygen.

He also did a test to see how long she would last without any oxygen. Not more than a minute. He also tried her on half a liter to see how she would fare. Great as it turned out. She satted around 93. He said anything above 92 he was fine with. Now that the hypertension is not a worry, lower satts can be tolerated.

Currently she has a cold and so he seems to think that once it clears up, she should be able to be on a 1/4 liter during the day. Eventually she will be on no oxygen during the day and then at night also. When that happens, they will have her in for a sleep study to make sure she is not having any apneac events through the night. Back when we were in the NICU it was guestimated that she would be on oxygen until about 2 years old and the pulmonologist seemed to agree with that.

We are coming up on RSV season here in Houston. It starts at different times in different areas of the country. In Houston it is recommended for an RSV shot to be given every month throughout the season starting in October. Our insurance company has randomly selected November as the start date and is giving the doctor's office guff about paying for a shot in October. The shots cost thousands of dollars each! So Amelia may be unprotected for the month of October and we will have to be super cautious about what she touches and who touches her. We started getting pretty lax about our hand cleaning, but now we really need to be more vigilant about it.

We also went to the pediatrician yesterday. I was very concerned about the tremendous weight gain Amelia has had over the last month. She gained 3 lbs. She is now 23 lbs. 1 oz and is 30 inches long. The doctor also shared my concern and so we are reducing her calorie intake from 600 to 500. So maybe there will be a slimmer most svelte Amelia debuting next month. She is 14 months old adjusted and and is wearing anywhere from an 18 month to a 24 month. Hopefully, if she slims down she can keep wearing this size for a lot longer.

The pediatrician also said she thought she heard a slight crackle in her front right long and so she ordered a chest xray. The chest x-ray was so weird. They stood Amelia upright and then put her inside of this plastic form that went around her chest. She had to be in it with her arms raised up in the air and the the shoulders were clamped in there too. Poor baby was crying, but it was over pretty quickly. I don't expect there to be anything to terrible to be found on the x-ray. Hopefully I will get a call from the pediatrician today about it.

This week we got a stander for Amelia from the physical therapist. It is quite a contraption. You lean it back, place her in it and then strap her in with velcro at her chest, tummy, thighs, shins and over her feet. Then you lean it to where she is standing upright. It makes her bear weight on her feet. We are going to start out 15-20 minutes a day and then move up to 30 minutes.

She is doing better at leaning way forward to play with toys out of her reach and she can hold herself in a creeper position, holding herself up with one arm with reaching out to play with a toy with the other arm.

Also we are being much more dedicated to her eating regimine. I put her up in her high chair 3x a day and begin her pump feeding while I do some mouth exercises with her but putting a pencil shaped vibrater on her lips and cheeks and getting her to bite down on it. I let her play with food on her tray and allow her to try to put her fingers in her mouth. And then for about 10 minutes I give her little tastes of food from a special flat spoon. She usually will do about 6 or 7 bites. But she does this 3x a day, so she is making some great progress in this area.

All and all I am really pleased with how far she has come. She is constantly learning new things and improving all the time.