DS Support Group

Once a month we attend a DS New Parent Support Group. It is wonderful. We have become friends with several of the other parents. It’s nice having friends who can actually empathize with what you are going through and to be able to follow the progress of everyone’s kids.

Although I’d be totally happy just sitting and visiting, each meeting is accompanied by a guest speaker who specializes in an area pertinent to people with DS. Some nights I just wait for it to be over so I can start talking to the other families but tonight the guest was an ENT and we were ready to hear what he had to say.

It was very informative and he answered several questions that we had about Averi’s unilateral hearing, her tracheomalacia, and her laryngeal cleft (he’d only seen one in his 18 years of practice, proof of how uncommon they are).

As we kept asking more questions, I realized that several of the other parents were giving us that “are you serious” look. One mom even asked us how we look so sane with so much going on. For the first time I stopped, looked around the room, and realized that we have one of the most medically complicated children in the group.

I knew that the other kids were progressing faster than Averi (which trust me it’s very hard to accept that your child is behind the children who are already behind) but this was the first time I recognized just how much we really do have working against us. We spend so much time trying to learn how to eat that physical progress has been put on the back burner.

I actually felt sorry, not that she is here because I love her to pieces, but that life is so hard for her and for our family. I want the best for my children and even though I am literally going crazy trying to keep up with all her appointments I just wish there was something more I could do.

I left the meeting knowing that we will be back next month but not knowing if I want to go because it will just remind how much harder we are working to make less progress than the other kids.

I tell myself everyday – it doesn’t matter when she learns it, it just matters that she does. It still doesn’t keep my heart from aching.

OT: Week 17, Sippy Lid

This last week has been about the same as far as feeding is concerned. Frances had mentioned on Thursday that I should try skipping a feed some time soon to see if Averi acted hungry or if she would take a whole feed orally if her stomach was emptier. I have been waiting to do this because I changed her feeding schedule last week in trying to get rid of the night time feed/strangulation hazard.

Yesterday Averi took a longer nap so I tried feeding her an hour late. She took the first two bottles (each bottle is 30 mls) and wasn’t crying yet so I decided to try for #3. After that she was more than half way so I pushed her to eat some more.

It took over an hour but she was able to drink a whole feed of 5 bottles (plus thickener and added baby food). It was only once, but at least we know now that she can do it!
(This is my latest solution for keeping her mess to a minimum. It only worked until she grabbed the bottom of the bib and rubbed it all over her face.)

We also started adding whole milk (25%) into her feeds last night. She has done alright with the yogurt and we are quickly running out of breastmilk so I thought I”d give it a try. I’m not getting my hopes up but it would really be nice if the dairy allergy was gone.

Today Frances tried putting some thickened milk in a sippy cup lid and feeding it to Averi (the milk not the lid). She did alright with it and got several swallows down when she wasn’t preoccupied with chewing on the lid.

We then switched over to the bottle and she drank 3 bottles before literally falling asleep in my arms. I’d say it was a decent day (I better stop saying that because trouble is bound to be lurking around the corner).

Next time we are going to try using a bottle with a wider base in hopes of keeping Averi’s fingers away from her mouth. She spends half her feeds trying to get her thumb into her mouth and usually ends up wrapping her hand around the nipple while she’s drinking.

Snake, Rattle, and Roll

This weekend DSACO (Down Syndrome Association of Central Ohio) had a big get together at the Zoo. I think close to 500 people attended, including us. It was so neat being able to see so many people who have been touched by DS in our area.

Sometimes all I can think about is what will happen as Averi gets older and other times she is developing so slowly that I forget she will ever grow up. I loved being able to see that we do have a future and where it is going.

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.