One Year Update

It's been one year, and while Bella has been slow to grow and develop, there are a few things that she has accomplished.

Weight

at birth -

5 lbs 0 oz

Weight at 1 year - 15lbs 8 oz

Height at birth - 18 inches

Height at 1 year - 26.5 inches

We are still struggling to get Bella to hold her head up, she tends to prefer to just let her chin rest on her body and look around. She will roll from side to side, while on the floor. And occasionally she has rolled from her stomach to her back, and from her back to her stomach. She still does not like to push up with her arms, and also doesn't like to take any weight onto her legs (i.e. standing). She also doesn't do well sitting, although I think that has more to do with her not holding her head up. Meaning her head starts leaning, and the whole body just goes with it. Although she has gained more of a personality. She definitely has a social smile, and has a very adorable deep laugh.

A couple weeks ago we were fitted for a kidkart, basically a fancy stroller that acts like a wheelchair. It will better position her for feeding, and playing. We are still waiting for approval from the insurance company to see if we will get one. Now we are just basically waiting for her cleft palate surgery that will happen in December. I have a feeling that no matter what skills she learns between now and then, we will be starting all over once she starts recovering from the surgery. We also were a little frustrated with our pediatrician during her 1 year checkup. Our pediatrician is still worried about her weight gain, and wants us to look into using a feeding tube. Personally I think that's ridiculous since she eats fine. And plus there are children similar to Bella who at 2 years only weigh 16 lbs, so since she is already there at 1 year, I think she is doing great. I think transitioning to foods will be a whole other story, but we don't plan on tackling that feat until after the surgery. And besides, at 1 year we still have no teeth.

It's my party

I decided on a theme for her first birthday party....turtles. We figured Bella is slow in her development and growth, so she's like a turtle. I was inspired by different things on the internet and attempted to create designer suger cookies, turtle cupcake toppers, a cupcake stand, and of course put everything together. Needless to say it took a lot of work, but I think it turned out great.

We had a really good turn out for the party, I think about 24 adults and children were able to come. Here we tried to get all the kids in for a picture. The Nebraska football game was also going on, which we had to order.

Bella was able to sample the frosting......I think she might like it!!

Summer months

We were supposed to go back to Nebraska for 4th of July but Bella and I both got sick, and we decided to keep our miserable selves home. We were in a good enough mood that we could put on our new clothes that grandma Sneller bought us and ham it up with dad. In mid-July we were able to go back and see family. Here Bella is playing with Grandpa and Grandma Sneller.

We also caught up on some reading, Thanks grandma and grandpa Kuhlen for the great book.

Lastly we had our first surgery to get ear tubes placed. It was a long day for what was supposed to be a 5 minute surgery. Mostly that was due to waiting around for the surgeons. We also got a picture with Dr. Moore, who is the dentist who molds our obturator. He currently is retired, but is always nice enough to come make us another one when needed.

The summer months 7-11 months

Bella at 7 months
Bella at 8 months

In June Bella decided that she didn't need sleep anymore. Our once wonderful sleeping baby, no longer slept. AT ALL!!! In was also then that Jesse and I went on a much needed vacation to Mexico while my mother got to stay with Bella. Poor soul, I think she was looking forward to when she could go home and sleep. We are still struggling with the sleep issues today. Although I have done some research and it seems this sleep thing may be common for chromosomal children, and this is something we will just have to deal with. I would say 3 out of the 7 days we are completely exhausted from a bad night's sleep. And the other 4 days when she sleeps through the night are glorious. This is of course as long as she isn't sick, because when she is sick, everything changes. Bella at 9 months
At around 9 months Bella had stopped gaining weight. In fact from 6 months to 9 months she had lost a couple of ounces. So we started seeing a bunch of new specialists. We meet with a development pediatrician specialist. He was the first doctor to admit to us, that in looking at Bella he would be surprised if she ever walked or talked. He told us to not rule anything out, but also to be prepared for that fact. I believe I cried a little on the way home from that visit, as I was coming to terms with the fact she would probably need a wheelchair, and would be far behind, but I hadn't heard the term "NEVER".
Also because she had stopped gaining weight we were told to stop doing baby foods and concentrate on higher calorie formula to get her the nutrition she needed. So we did.

Bella at 10 months

A new year!! 4-6 months

Bella at 4 months

At the beginning of the year we went back to see the cardiologist who informed us that Bella's holes in her heart were so small that he didn't see a need to perform surgery, yeah!! This was also around the time we began to really notice that Bella was falling behind on her milestones. She still was not holding her head up, and she also refused to bear weight on her arms. It was at this point that I got in touch with Infants and Toddlers program through the state and they began to send a physical therapist, Cathy, over weekly to work with Bella.

Bella at 5 months.
Bella at 6 months.

Throughout the winter we battled many, many colds. I guess we are extremely lucky it never got worse than a cold, but we spent many a night up with Bella as she was coughing so hard that she couldn't sleep. And even though it was just a cold, she was unable to get over them herself and we always had to get medicine for her. They had told us she would probably have a weakened immune system, and it seems they were right.

Girls night in!!

3 months and counting

In the month of December we made plans to head back to Nebraska for the first time and see all the family. Unfortunately I had two grandparents, Grandma Joan and Grandpa Bob, that passed away a couple of days before they were able to see Bella. We hope they are now watching over us and keeping Bella safe.

These were the famous boots that Bella received many compliments on....thanks Kelli for the great gift!!

Is it really 2 months already

As we entered November we started to add a lot onto our plate. We had all the family down for Thanksgiving and celebrated Bella's baptism that weekend.