Thursday, May 27, 2010

Allergy RAST Test

The nutritionist thought that it would be a good idea to reintroduce dairy into Averi’s diet now that she is a year old (it’s common to outgrow dairy allergies during the first year) and our breastmilk supply will soon be running out. As I’ve said before, I started her on yogurt (on the 15th) at the same time she got sick and therefore didn’t know what caused the rash she got a few days later.

So we stopped the dairy until the rash went away and she was healthy again and started introducing it again on Sunday (23rd). By Tuesday the rash was back. Now this rash is just little tiny red spots all over her body and it doesn’t seem to bother her. I decided to call the nutritionist yesterday, not because I was worried, but to make sure what I was supposed to be looking for in a dairy allergy reaction. They overreacted, stopped all dairy, and sent me to the pediatrician.

So we headed to the pediatrician this morning. Her rash was already looking better and he said that it didn’t look like the hives that usually accompany food allergies. I convinced him to just order a blood test since she is now over a year old (why that matters I have no idea).

Over at the lab, sporting the nasty bruises she got last week from her blood work, the tech couldn’t find a vein. Long story short, it took three women, over 30 minutes, pinning Averi to a bed and listening to her scream, and two sticks that consisted of wiggling the needle around inside her arm for several minutes for them to decide that she was a hard stick and it wasn’t going to happen.

They finally decided to go with a finger stick and squeeze the blood out, which took a while because she needed 3 mls. I was only able to endue it because I knew how helpful the results were going to be. Now we just have to wait for an extended weekend before we can get the results.

On a happier note, I got her thyroid results in the mail and they came back normal!

Ling Sounds

Today was also our monthly visit to see Jennifer at the Regional Infant Hearing Program. She has been letting us borrow some of her Signing Times videos and Kaili and I have been learning the ASL signs so we can teach Averi as she gets older. I did some signing with Kaili as a baby and it was very helpful so I have great hopes for Averi.

Jennifer has been working on what she calls Ling Sounds. These are common sounds that she associates with a specific toy, like:
•Aaaaaaaaahhhh – airplane
•Booooooooooo – light up ghost
•Beeeeeeeeeeeee – vibrating bee
•Ssssssssssssssss – snake
There are more but we haven’t gotten to them yet. She also begins each session by banging on drums and shaking maracas with Averi. She will slowly start using them further away from Averi and then hidden behind something to see if Averi will turn in the direction of the sound. Averi responds really well to this.

She suggested asking the audiologist if it would be beneficial to give Averi a Crossover hearing aid which takes the sound from her good ear and puts it into her right ear. She says this will keep the nerve stimulated, even if it’s not really hearing very much.

Wednesday, May 26, 2010

PT: Week 8, We Want More

On a side note, make sure you are checking the “Latest Post” list on the side because I have added in a few new posts out of order. Maybe one day I will get around to posting about the first 3 months of her life, you know, now that she is over a year old…

Averi is now doing really well at sitting. I can sit her down, leave the room to help Kaili with something, and come back to find her still sitting (even if she is screaming her lungs out).
Abbi was very impressed, so impressed in fact that she decided she needed more. I am quickly learning that once you learn how to do something in PT, they want you to use that skill to do something more. So she started teaching Averi how to get up to sitting.

Getting to sit involves laying her on her back, rolling her to her side, and pushing her hips down so she will pull herself up to sitting with her core and hopefully push a little on the floor with her arms. It also involves a lot of crying, but what at PT doesn’t?

Averi is also tolerating tummy time so much better now that I have that little pillow. However, she is also perfecting her rolling onto her back. =P She is using her arms much more to push against the floor so hopefully they are getting stronger. I suppose we will just keep working for more.

Tuesday, May 25, 2010

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.

Monday, May 24, 2010

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.

Sunday, May 23, 2010

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.

Thursday, May 20, 2010

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.


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.

Wednesday, May 19, 2010

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.

Saturday, May 15, 2010

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.

Friday, May 14, 2010

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!

Wednesday, May 12, 2010

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.

Monday, May 10, 2010

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.

Sunday, May 9, 2010

Birthday Cake

Averi is finally starting to feel a little bit better so I decided to make her birthday cake today. I am glad to say that she delivered.

For Kaili’s first birthday I made a baby cake and put a hemangioma on it’s forehead so it would look like her. We thought it was only appropriate to make an Averi baby cake, complete with heart scar and Mickey Button.

Kaili was way more excited than Averi.

The first grab.

We took a ton of pictures, along with a really long video that I will not bore you with, so I tried to just pick out the best ones. At one point she surprised us and went face first into the cake.

When she was done with the cake she moved on to her foot.

That's right, I did that.

I was really worried she wouldn’t know what to do with it, but she managed to make a very good mess (with the help of her big sister). I even found out later that Kaili pulled out the Mickey and sucked it off. It had been washed but it had also spent the last few months in Averi’s stomach. Mmmmm!
Happy Birthday again Averi.

Thursday, May 6, 2010

Speech Evaluation

Now that Averi is a year old and just barely starting to babble, we were referred for a speech evaluation. Of course we had to go to the other side of Columbus for it, but the lady was really nice and Averi enjoyed playing with her bubbles.

The evaluation took about 1.5 hours and she concluded that Averi is at the level of about a 6-9 month old, which isn’t as bad as I thought. She said that Averi will definitely need speech therapy but it probably won’t be much good right now since she isn’t talking yet. The waiting list is long so she went ahead and added Averi’s name to it.

She called me back later today and said that she had heard about a new monthly group program that encompasses OT, PT, and Speech Therapy. I told her we would give it a try. For now she just wants us to keep working on imitating sounds and trying to get Averi to repeat them back to us.

On a funnier note, I noticed tonight that Averi’s steroid had run out in half the time it was supposed to. I immediately assumed the pharmacy hadn’t given me enough. Dan then pointed out that I had been giving her 1 tsp twice a day instead of ½ tsp. Opps!

I called the pediatricians office and the doctor said that Averi was going to be alright, that she didn’t need to go to the ER, and that I would have to get another prescription to wean her off the medication. Nice, my daughter is addicted to steroids because of me and I now have to wean her off of them slowly so she doesn’t go into withdrawals.

Monday, May 3, 2010

What Doesn't She Have?

Averi was already sounding croupy when we went to the Neonatal Clinic on Friday, so we decided to forgo letting her eat her birthday cake until she is feeling better. She actually did alright for her birthday, but by last night she was feeling awful.

Sometime during the night she decided that sleeping in the swing wasn’t helping her breathe, she managed to obtain a pretty decent fever, and she even threw-up all down my back. (I tried to decrease the mess by leaning over the crib and instead dripped all over everything – not the best idea.)

By this morning I was glad I had called OT last night to cancel and instead packed up and headed to the pediatrician’s office. I was a little hesitant because the last time she had croup the doctor simply told us to keep an eye on her and sent her home. By the time this visit was complete, I was glad we went.

Apparently Averi has croup, an ear infection (which took about 20 minutes to see because her ear canals are so small and the pediatrician had to keep cleaning them out while I held her down), an upper respiratory infection, the beginnings of pneumonia, and possible asthma.

He gave her a breathing treatment, which helped to calm her breathing, and sent us home with three medications and a breathing treatment inhaler. This is now what her morning and bedtime cocktails look like.

So that we wouldn’t have to pay for a whole aerosol machine, the pediatrician gave us an inhaler and a breathing chamber (not covered by insurance). Let’s just say that Averi doesn’t love having this thing held over her face for extended periods of time.

Hopefully this isn’t foreshadowing of what her second year has in store and she will start feeling better soon.

Sunday, May 2, 2010

Happy Birthday!

It’s hard to believe that a whole year has passed since our beautiful little baby girl was born and life forever changed as we knew it. A lot happened during Averi’s first year of life, a lot more than anyone should have to undergo in an entire lifetime, but she has endured it well.

At some points, time seemed to be standing still, but in whole, the last year has been a blur. It seems like forever ago that we were spending every waking hour inside the dark walls of the NICU.

It’s so strange to think that Averi is a whole year old, but I’ve decided that part of my denial is due to the fact that she doesn’t act like a one year old. Averi, we are so proud of you and so grateful that you decided to join our family.

We celebrated Averi’s birthday by going out to get frozen custard, which was obviously more for me than it was for her.
The beautiful birthday girl. I LOVE those eyes. They show her every emotion.

Nutrition gave us the go-ahead to start slowly adding dairy into her diet, so we started her off with a few bites of yogurt and a small taste of custard. I’m not sure how she felt about it.

After dessert, we went to a Greek restaurant (more dairy and soy!). Everyone sang to her and they even gave her a piece of cake. We let her tear into it, even though she couldn’t eat any of it.

As it turned out, she was more interested in eating the napkin anyways.

Kaili was a great big sister and helped her eat her cake (the rest of us did too).

Since it was her birthday, we thought it was only appropriate that we attend the 5K Buddy Up Walk for Down Syndrome. The weather was beautiful! My dad even came up for the weekend to spoil us and help us keep a decent pace during the walk.

Kaili couldn’t wait to get her face painted and we couldn’t leave Averi out. Note the shirts that Dan’s parents sent the girls for Averi’s birthday – “My Sister is my BFF.”

At the end of the day, we went home and let Averi ‘open’ her presents. It was a perfect day. Happy Birthday Averi! We love you.