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| Once upon a time, I killed a fly with my bare hands and it unknowingly fell into my Raisin Bran. Luckily I distinguished it from the other raisins before taking another bite and threw it all away. |
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| He loves to run through the leaves! |
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| Waiting for occupational therapy |
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| Waiting for the ENT |
Our old oven was flaky for the past few months. Every day I would try to turn it on and see if it worked. If it did, I would just keep it on and bake cookies, muffins and dinner. It worked about once every couple of weeks. With Thanksgiving coming up and us hosting our friends, we decided to bite the bullet and get a new one. It bakes so evenly and nicely and turns on every time. I can also lock the buttons so my kids can't turn it on/off by themselves!
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| The inaugural use of our new oven! |
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| Giving love to the Leila in the mirror |
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| Brotherly love |
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| Eating at Wendy's |
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| She loves the lights. |
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| Installing the new oven. Caleb loves to be Allen's righthand man. |
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| I'm officially an adult -- I'm really excited about a new oven! |
It's been a couple of months since I last sent out an update on Leila but want you to know we're grateful for your prayers and know they are answered. Leila has come a long way in the past two months! With the help of a weekly occupation/physical therapy appointment, she is getting stronger, sitting up on her own, rolling around on the floor to get to toys, can hold herself for almost a minute up in crawling position (when placed in it) and is eating food from a spoon better. In fact, Early Childhood Intervention came to assess her on Oct 17 and when they came back last week, they could not believe how much she has improved!
In ECI's initial eval, Leila was only a month or so behind on most things (cognition, self-help, gross motor, fine motor) but she was three months behind in communication and a month ahead in social/emotional. She's doing SOO well with the gross motor and fine motor! Cognitively, she's developing quickly... for example, she turned Caleb's bus over and started spinning one of the wheels and then began spinning the other wheels one by one. She's started to look for hidden things (if I hide my phone from her after she's been holding it). Caleb is the big reason she's ahead in social/emotional! He is a great big brother and she LOVES him! Communication she's still definitely behind. Looking back at videos of Caleb at her age, she doesn't have listening comprehension skills anywhere near where he was at and she is very slowly learning to babble/imitate sounds that most babies her age make. We feel very blessed for how well she is doing!!!
After her frenulectomies (to release her tongue-tie and tied upper lip) at the beginning of October, she started to nurse better and gain weight. However, with her increased movement/activity, her weight has plateaued and we met with a dietician to try to increase her calories. She still won't take a bottle of any kind and we can't feed her the higher calorie/fat dairy products so we're supposed to add oil to her solid foods and avoid the low calorie baby foods like green beans and squash. Unfortunately, she has low muscle tone within her digestive tract and with eating more solid foods, is having constipation problems... poor girl! We're following up with GI again in January to reassess her growth.
We did find out today that another part of her feeding difficulties include a submucousal cleft palate. We kind of suspected she had this because she makes abnormal, nasaly sounds and has nasal regurgitation and it is common in 22q kids. This means that although her soft palate looks almost normal, the muscles do not connect in the middle and there is only a thin mucous membrane there. They aren't doing surgery immediately because she is not having middle ear problems, seems to be able to eat normally (this is something we'll address as a potential issue with GI if her weight doesn't increase over the next six weeks) and she may be able to speak normally. We'll follow-up when she's about a year-old to determine if she needs surgery.
We've had great news from other specialists:
-Her immunology reports came back outstanding! She is low in number of T cells but the ones she has function normally so she can continue to receive vaccinations and doesn't need to go back in for a year!
-Ophthalmology said her eyes and associated nerves look great and doesn't need to go back for 18 months.
-Hearing is great.
-Body x-rays came back normal, no missing/extra bones
-Kidney ultrasound came back normal (phew!) so we don't have to worry about kidney problems.
-Genetic results came back and she did not inherit 22q from Allen or I. :)
We're meeting with endocrinology and cardiology in December and hopefully hear good things from them too!
Caleb gets to play at a friend's house every Tuesday during occupational therapy and loves it but is a trooper about going to all of the other doctor's visits. We attempted one day of preschool (I have a friend who teaches, so she let him try it out one day) but he didn't love it and was ready to go home and take a nap as soon as I got there to pick him up.
Thankfully Allen has been able to go to the majority of the downtown appointments with me! We pick him up on the way and drop him back off at work (he's about 15 minutes away from the Texas Children's Hospital), some days he just drives in with us. It saves my sanity for the six hour-long fiasco that each appointment usually turns into. It turns out that Leila is a particularly difficult child to draw blood from.
We just had the primary program last week. I was in charge of it and Allen is the Primary chorister, so it's a relief to have it over now! The kids did a great job! The Stake Primary Presidency was so impressed with how well all of the kids knew all of the words to each song.
We're looking forward to next week with Allen's four day weekend and no doctor's appointments over Thanksgiving!
