OT: Week 16, Chewing

Frances had a meeting Monday morning so we had to reschedule for today and meet her over at the main hospital. When she called to reschedule I told her that Averi still wasn’t doing well with the bottle and she suggested we try using a sippy cup. I tried putting some thickened milk in a sippy lid but she just wanted to chew on it.

I think she is finally starting to teeth because she is chewing on everything, including her own thumb. Frances said we can use this to our advantage and got out one of those net things that you can put food in. The baby can chew on it but only little pieces of food come out so they won’t choke. Frances put a fruit chew in it and Averi went to town!

She ate almost the whole thing and looked happy and drunk when she was done.

Frances also tried giving her a bottle but she was kind of tired from all the chewing so she didn’t do much with it. I can’t wait to try some other foods in the net and see how she does.

BCMH

After going to OT today we headed down to the lab so Averi could get some blood drawn to test her thyroid. This is something that has to be tested annually in people with DS because they are known to have problems with their thyroids.

I forgot that Averi is hard stick. The lady put the rubber band on her left arm and felt around for several minutes before deciding that she couldn’t find anything. This alone left a bruise on her left arm.

She then switched it over to Averi’s right arm, this time with gauze under the band. She finally found a vein and stuck the needle in. It went through the vein and she pulled it in and out several times before finally getting the blood work. I won’t even begin to tell you about the nasty bruise that left.


We then headed home to meet with the BCMH nurse. BCMH (Bureau for Children with Medical Handicaps) is a secondary insurance that Averi qualifies for because of her heart condition. It is amazing and even covers most of our co-pays, but only for things pertaining to the specific conditions listed.

The nurse was coming to fill out the yearly re-application forms. This is new to me because we have had it for a year and no one has ever contacted us much less answered my questions about all the hoops we have to jump through.

Some things I learned:
•They have a nurse that will come to our house to check Averi’s progress and actually explain how the system works
•Averi’s laryngeal cleft should also be covered - we have been paying for all of that care for the last year
•They have a nutritionist that will come to our house – we have been going to the clinic every three weeks for nutrition care
•They will pay for formula – remember that Alimentum and $50 a can Elecare she was on that wasn’t covered by insurance

As frustrating as it was to find out all of the things we have been missing out on for the last year, it is great to know now and hopefully we can get some of our money back (unfortunately that has to be done with each individual office, not through BCMH). I feel like we are always finding things out after the fact and I spend a lot of my time looking back in hindsight and wishing I had known.

PT: Week 7, Sitting

This Sunday at church one of my friends had her son sitting on this really cool mat. It had a pillow on it, kind of like a miniature Boppy, and I immediately knew I had to get one. The pillow was the perfect size for tucking under Averi’s bum to help her sit and for laying under her chest to help with tummy time. When I asked her about it, she just gave it to me and said she was done with it anyways. It’s the little things in life that mean the most.

Monday night I laid Averi on it on her tummy while we ate dinner. Not only did she stay there the entire time we ate dinner, but she didn’t even cry. She usually HATES tummy time and immediately rolls to her back.

I couldn’t wait to show it to Abbi so I took it with me to PT this morning. Abbi was equally excited. We used it to help with sitting and then Abbi slowly moved it away from Averi’s back. The next thing I knew she was sitting there all by herself!

I think Abbi was trying to make me feel better about missing last week, but she kept talking about the great improvements Averi had made even since last week. We still just have her leaning forward but she stayed sitting up even when crying or looking up at me.

We even managed to get Averi to laugh at one point during the session which means that she wasn’t crying the entire time, granted she did not like learning to sit up from a laying down position. It was such a great day, I’m still on an Averi can sit buzz.

LEAP Program

Today was our first time at the LEAP (Learning Enrichment Activities for Parents) Program. I thought it was going to be more of a group Q and A session for the parents but it was more of a let your kids play and we’ll watch them setting.

During the session the three therapists (Occupational, Physical, and Speech) rotated around the room visiting with each parent and child to see what they are doing and give suggestions for things to work on. Then at the end, they gave me handouts with ideas of things to do with Averi over the next month.

Averi was the only baby so we ended up just sitting in the corner away from the toddlers. They decided to separate the younger and older kiddos so the next session will just be kids that are not walking. Hopefully it will be a little less crazy.

Each session involves paying three co-pay, one for each specialty, so I am not going to continue to go if we aren’t getting more out of it than we do each week in the individual therapies.

One Year Check-up

Today I took Averi in for her one year check-up. She weighed in at 15 lbs 6 ozs (she’s lost weight since being sick for 2 weeks), measured 27 in, and had a head circumference of 16.75 in.

I’ve stopped giving Averi yogurt since she got that rash, in hopes that we could try again when she was feeling better. Dr. Stevens checked her out and said that she is healthy and we can try adding it back in again.

She got four immunizations, two in her leg and one in each arm (this is something new). The nurses are always amazed how easily she calms down if I just put her up on my chest and let her suck her thumb. It’s like magic.

For once it was a pretty non-dramatic visit. He assessed her and she’s delayed but still at a decent spot for everything else that’s going on. I have to admit, it’s nice not having a ton to write about. Hurray for healthiness!

PT: Week 6, Not Fair

Since my friend Tina is in town, Dan took today off work and volunteered to take Averi to PT. I woke up to find a picture on my phone with the following note attached: “Guess who sat for over a minute by herself?!” (I can’t get the picture off my phone.)

Keep in mind that he has never even been the facility before, much less endured an OT or PT session while trying to keep track of Kaili like I do twice every week. How is it fair that he is the one that gets to see her sit for the first time by herself? If he wasn’t doing me a favor, I’d be much more upset.

I’m sure they worked on all the other normal stuff, but that is the only thing I remember him telling me. Now I just have to see if I can get her to do it at home.

OT: Week 15, Late

This morning I woke up, exercised, got ready, got the girls up, looked at the clock, saw it was 8:15, thought it was 7:15, panicked, threw the kids in the car, and called Frances to let her know that we would be about 35 minutes late. I have no idea how my internal clock got bumped back an hour but it most definitely did.

Frances told me I didn’t have to come but I really wanted to since Averi hasn’t really taken anything orally since getting sick almost two weeks ago. When we got there, I quickly fixed a bottle and Frances was able to use chin support and get an ounce in Averi before it was time to go. Hopefully next week will be a little bit more productive…and we’ll be on time.