Baby Steps

Sunday, August 19, 2012

One year may need tissues

I have struggled for days on what to write about for this post. I have gone back and forth on whether or not I should just write a happy post or a truthful post. I finally decided to combine the two.

Birthday's are a huge celebration and should be a very happy day with lots of fun and love from people who care about you. We are celebrating Piper's birthday 3 times this week so I think we have that part covered. We are very excited and are celebrating her birthday but also celebrating that we have made it this far. It's a bittersweet day for me.

I made the mistake of reading all of my blog posts yesterday which brought back so many emotions. One of the hardest posts to read was the one I wrote a couple days after she was born. I was so happy,positive and hopeful in that post. We really thought everything was going to be okay. I had no idea how drastically our lives would change in just a few months. The reason I read the posts is because I thought it would help me see how much a I have grown over the past year. What it made me realize is I am not happy, hopeful and positive like I used to be. Not saying I don't have those feelings, they are just extremely different than they used to be. I have been conditioned to not be overly happy or overly sad...I guess it's my defense mechanism against the stress.

The other reason I took a trip down memory lane is to see how much she has grown and changed. This was also a little bittersweet too. She has definitely grown, and by that I mean physically. She is huge! She has gone from a tiny adorable baby into such a beautiful little girl. On the other side of this her development has not grown much. We all know that she may never meet those milestones we want her to and we have learned to accept that. It's something we all deal with and try to not let it upset us too much. It's just so hard to know an entire year has gone by and how long it has taken for her to do things a typical child would learn in a week. It's heartbreaking. To know that I have spent the past year just trying to teach her how to play seems crazy. I guess this really opened my eyes to how fast time flies but in her world most days time stands still.

This year has changed us so much. Some of the changes have made us much better people but some have really affected us in negative ways. Piper has made an impact in the hearts of many people in just a year. She has taught us unconditional love. She has taught us how to fight and defend our baby girl. She has taught us how to be even more educated, persistent, and stubborn. This experience has also made us feel hopeless, angry, bitter, disappointed and lost many times. They say the first year is the hardest. I think the first year is the hardest because it takes that long to be able to learn how to live your new life.

This year has been an enormous challenge. I wouldn't trade it for the world. I love this girl more than anything. We have no clue what the future holds for Piper but we thank God that he has allowed us to be her parents. She is amazing and even though it's so hard most of the time she is worth it.


Friday, August 3, 2012

Doctors, Doctors and more Doctors.

The past two weeks have been crazy. Piper had an EEG, Swallow study, visit to the ENT, GI and will visit the Neurologist today. My nerves are running high today. We will be discussing the results of the EEG and since she did not have a new seizure during the study we know there won't be a lot of new information. We will be deciding what medicine to try next. We have already done our research and know what we want to do. We will also be expressing our concerns with our experience at this office so far. To say the least we are extremely disappointed. In my opinion the neurologist is the top dog when it comes to Piper's well being. This person should be able to be our guide and making suggestions and decisions for us. We are  not doctors and are growing tired of making all the decisions. Piper's seizures have increased a lot this week and we are very concerned. We need the doctor to share our concern and act quickly. After going to the conference and speaking with parents about how awesome their neurologists are we know that there is room for improvement. If it means going somewhere else, then we go.

We did have some wonderful news after Piper's swallow study. Back in November her first study showed that she aspirated (breathed in liquids) and we had to thicken her food. Now it shows that her muscles have gotten stronger and she no longer aspirates. This is amazing!!! I was shocked and asked them to check again. This means she can start speech therapy and learn how to eat new foods. This also means that those dreaded feeding tubes won't be needed right now. I pray they never will.

We met with the ENT to get established just in case. They checked Piper's hearing and she has no problems there. Once again, great news!

We also met with her GI for the first time. GI issues are second to seizure control for girls with Aicardi. Feeding issues are normal and most girls are on feeding tubes. Another issue is constipation which can also lead to feeding tubes if it cannot be managed. Piper will be taking a mixture of medicine and pedialite to help her be more regular. She will also be doing a barium colon study next week to make sure her colon is working properly. The doctor said, she is a plump little doll...looks like she is eating just fine. Once again I pray she continues to be a good eater.

Piper is now eating normal foods and seems to be getting used to new formula again. She is still not very interested in most solid foods but likes apples and avocados. She doesn't seem so fond of vegetables, she may have inherited one thing from me. We will have a speech evaluation sometime soon so we can get started with speech therapy to help her learn how to eat new things.

Next week Piper will be getting fitted for braces for her stander. We have ordered some equipment for her but it takes a long time to process the orders so there is no telling when we will get the stuff. One of the things we have ordered is a special needs car seat which we need very soon! She has just a few weeks left in her infant seat so hopefully we can get the seat soon!

We celebrated Justin's birthday on the lake last Saturday and had a great time. Piper seemed to enjoy being on the boat and having the wind in her hair. We also learned that a life jacket is an awesome tool to support her when sitting. I will be adjusting one to make it a little more comfortable so we can use it at home!

                                                                      get me a new seat!

                                                    Are you going to feed me or just sit there?

Thanks for reading and supporting us!