Flu Update

No seizures last night, but a very frightening choking incident in the late evening.  Aliyah was crying in her TumbleForm Feeder Seat and I had just gone around the corner to the linen closet to fine some Baby Vicks for her.  I heard her cough and make a choking sound which was not terribly unusual, but then I didn't hear anything else...silence.  Alarmed, I quickly put the box down that I was digging through and peaked around the corner.  I saw that she had arched back so badly when choking that her head was pretty much stuck between the seat and her back.  I heard a strange whistling sound and her body was heaving with the effort to get air into her lungs.  I lunged toward her, grabbed her body and swung her down onto the floor on her stomach.   We both lay tummy-down and face-to-face on the floor for a few minutes while trying to catch our breath for two very different reasons.  I prayed aloud for her while we lay there breathing together, trying to calm down.  As I spoke, she gave me a big grin.  Crisis over.

Tylenol seems to be controlling her fever for the most part.  I hold her hand most of the night so I can be aware of any seizure activity.  I've noticed that any change of position, no matter how slight, seems to cause her great discomfort.  Hmmm...I'm just keeping a close eye on her.

Update

Thankfully, no seizures last night...some infantile spasms, I think. I kept her on Tylenol all night. She seems to be coughing pretty well so far...no choking and gagging like yesterday morning. Thanks for praying!

Thanks for praying!

Thank you for praying and your offers for help! April is bringing us some much needed groceries this afternoon and a ThermoScan thermometer to help get a more accurate reading on her temp. Because of her CP/high tone we have been told not to check her temp rectally. Under the arm is uncomfortable for her which makes her cough and choke more than she is already.

Flu

Aliyah has the flu. It knocked the other three kids down for 5 days with fevers and horrible coughs. Please pray that she won't have a seizure from the fever, that her coughs will be productive despite her muscle tone issues, and that she won't aspirate anything into her lungs. Also, praying for peace of mind for me would be greatly appreciated. Randy's on a business trip and won't be returning home til Friday.

Adopting Aliyah - Part 8

What a blessing that Randy had that 10-day mission’s trip planned! His company also gave him an additional “4-Night” off which gave Randy a full two weeks to be home with the family after we returned home from the hospital. The number of doctor/therapy appointments during those first few weeks of July was pretty intense. We learned at the Developmental Pediatrician’s office that she may have a dislocated left hip. However, the ultrasound was inconclusive because of her muscle tightness. I was rather appalled to learn this because we had been told to do certain exercises with her legs that should certainly not have been done with a dislocated hip. Two weeks later, a repeat ultrasound showed that she did NOT have a dislocated hip. What a relief! Also in mid-July, her PEG tube was removed via endoscopy and replaced with a Mic-Key button which I change out at home once every 3 months.



June 26, 2010    PEG Tube

July 29, 2010    Mic-Key Button


Within a week of returning home from the hospital, Aliyah’s hair started falling out and the skin on her whole body peeled off, kind of like ours does after a bad sunburn. Even the skin on her fingers and toes peeled off. The new skin was nice and healthy looking and a little darker I think. Her new hair has come in quite rapidly; it is thick with super-tight curls...so much fun to play with! :-)

Some things we learned at the Special Infant Care Clinic @ Duke:

-She is at high risk for seizures because of neurological damage.

- We must not let a fever go above 100.4 due to the increased risk of febrile seizures.

-They wanted us to reconsider deferring vaccines because respiratory viruses can land individuals with CP in the PICU on a ventilator.
-Her immune system is weak due to malnutrition.
-We should expect her Mic-Key button to stay in at least 2-3 years (just in case).
-Night-time pump feeds will continue until she is at least on the percentile charts.


What we learned from our Pediatric Neuro-Developmental Specialist in Wilmington:

-It is difficult for the body to develop antibodies from a vaccine when the immune system is suppressed. We need to boost Aliyah’s immune system for a few months before administering vaccines. (HIB and Prevnar 13)
-The dark/pigmented spots in the whites of her eyes indicate soft tissue breakdown due to malnutrition
-Her aspiration/reflux difficulties indicate that she had a heart crisis (spasm) early on
-At 6 ½ months of age:
Her visual perception is way behind (1 month) – no startle reflex
Her gross motor development (3-4 months)
Her language and auditory development (5 months) – responds to bell and voices
-It is a good sign that her hands can open up
-Hyperbaric Oxygen Treatments (HBOT) will be very important for her. We can expect improvements in tone, visual perception, and language. (1.5 to 1.7 ATA with oxygen concentrator, 1 hour, 3 times a week)
-The brain is very plastic at a young age. It is amazing how it can repair itself by generating new pathways.
-Do not use Mirilax for constipation. It can cause “leaky-gut syndrome”. Instead, use Magnesium powder which increases bowel motility and calms the nervous system.
-Supplement recommendations: Cod Liver Oil, PhosChol, Bovine Colostrum, Probiotics, Multi-vitamin, Melatonin
-Consider Cranial Sacral Therapy once or twice a week
-Consider autologous stem cell therapy (from baby teeth, fat, or bone marrow)

That first month, she was fairly irritable and anxious during her wakeful times. She was learning that she could use crying for communication instead of rigidly arching, snorting, and staring off into space. We were pleased with her progress. Her disposition has improved dramatically! She is such a sweet-natured and happy baby...calm and mostly content. She loves social interaction and will give one of her beaming smiles with very little provocation. :-)

Developmental Milestones up to this point:

6 months – smiles, coos, says ah-goo, turns in the direction of voices, focuses on a face

7 months – smiles and coos quite frequently, chuckles, more alert to her surroundings, more content, turns her eyes and head to follow the movements of her siblings

8 months – giggles on occasion, starting to reach out towards toys…sometimes touching them with right fist, increased head control, cooing very frequently, increased range of motion on both sides of her body, improved focus on toys and people, lifting her head up for longer periods when on stomach

9 months – giggles easily when tickled (very ticklish), reaches towards toys on occasion and can bat at them sometimes, communicating that she is hungry by making a certain mouth/tongue motion and sound

10 months – more observant of details in her surroundings (animals, plants, toys)

11 months – 1st tooth Dec. 16th, 2nd tooth Dec. 21st

As of December 7th, she is 17 pounds!!! Her weight is finally on the growth charts—5th percentile—Woohoo!