Sunday, November 4, 2007

Blog titles are overrated! ;)

They say "God only gives you what you can handle." He must of confused me with someone else cause I don't know how I'm going to find the strength to handle the news we have received about my youngest daughter.



I decided to start this blog so I have a place to share all these thoughts and emotions that are so overwhelming to me and so my family and friends can stay updated on Brooklyn's progress.



My sweet little Miss B. My Beeswax. My B. Brooklyn is the youngest of my 4 children. She is the happiest baby who always has the most beautiful smile on her face. She is such a doll and I am so very blessed to be her mommy. The past few weeks have been some of the most difficult in my life. At her 9 month visit I voiced my concerns that she still wasn't sitting up and wasn't crawling. In fact, she wasn't doing much of anything. Her Dr. recommended we have her evaluated by Child Development Services. Their report was a real eye opener to say the least. They noted many facial abnormalities and problems with her movement which seemed neurological. They advised us to see a Geneticist and a Neurologist and to have her eyes and her hearing checked. They said she would need Speech therapy, Occupational therapy and Physical therapy.



I had some concerns of my own that I wanted to discuss with her Dr. so I made an appointment that day so we could go over the report. My concerns were that 1. She had Cerebral Palsy and 2. She was having a type of seizure called Infantile Spasms. Her pediatrician confirmed my suspicions after looking at her report and witnessing her having a "spasm." The next day Brooklyn woke up with a fever of 102.7. She was mildly cranky during the day and I just figured she had caught some sort of flu bug. That evening she was miserable and cried unless I was holding her. The next morning she was just as bad, if not worse. I was upstairs with her trying to calm her down because she was screaming and she had a seizure. I called the Drs. and they said to bring her right in. Her normal Dr. was on vacation and honestly, it turned out to be a blessing. I saw Dr. Anderson who looked her over and found no reason for her to have a fever so high. After explaining to her the events of the past few days she felt it was best to admit us to Maine Medical Hospital to try and figure out where her fever was coming from and to perform the appropriate tests to try and figure out why she was so developmentally behind.

Our hospital stay was 4 long days. I spent much of my time searching the net for possible diagnoses but her symptoms seemed to match everything and the lists of diseases and disorders were endless. If I were to touch upon every conversation and every possible diagnosis this would be pages long so I will try and sum up what we know, which isn't much at this point. Her fever was caused by her blood being infected with bacteria called Staphylococcus familiarly known as Staph. After treating her with 4 different types of antibiotics she is feeling better. She had an EEG test which was normal. What we suspected to be Infantile Spasms the neurologist said were Sensory Overloads. He also said he didn't feel she had Cerebral Palsy, she has low tone where as CP is more high tone. We met with a Geneticist who noted she had abnormal facial features. They measured every inch of her and ordered a chromosomal analysis to be done. Her hips were x-rayed and those thankfully are ok. She also had a MRI done and the results were that her brain was abnormal but it showed no significant or obvious reasons for her global developmental delay. Her Dr. ( I changed pediatricians btw) said the next 6 months to a year would give us a better idea of her prognosis and that at the least she is going to be mildly mentally retarded. :(

I'm hoping the blood work comes back this week and that explains all the problems we've discovered. I'm scared to learn of the results but at least then her condition would have a name, I could read about it, educate myself and find support. All of this is so overwhelming, all of the different types of doctors we need to see, all of the therapy sessions, all of the possible outcomes of the tests that need to still be done. It's so hard to think of all the possible things that could be wrong with my child.

That is the last 2 weeks in a nutshell. Pretty depressing huh? I will try and write a little something every day so everyone knows how things are going. Please keep us in your thoughts and prayers.

8 comments:

Heather said...

I am glad you started writing here Amy. I think it will help you to "get it out" too!

You know that you and your family are always in my thoughts. I will continue to hope and pray for the best possible outcome for Miss Brooklyn.

Our babies were just made to be looked at, beautiful things they are!

Jerinda said...

I cannot imagine how you are feeling with all of this. I don't have anything comforting to say to you, but I am here if you need me. I hope that you find blogging as theraputic as I do. ((hugs))

Mommy2twogirls said...

Amy, please know that we are praying for ya, girl. We love you.. I cannot imagine the roller coaster of emotions you are feeling. Please know that you can find peace and comfort in the presence of the Lord.

If you ever need anything, you know where to find me! ;)

Shan Marie said...

Amy, just wanted to give you great big hugs!!! You know that we are all here for you and you will make it thru this!! Miss B is so lucky to have a mom like you!!! Just as she is a blessing to you, you are a blessing to her!!!

Kitty said...

((((Amy & B))))

Lee said...

I don't even know where to begin. I'm so sorry that you and Ms. B are having to go through this. Just know we're praying for you guys!

Secret Agent Mama said...

Writing these things will be so good for you.

You are a great mom and these challenges were laid before you b/c of who you are!

(((((((HUGS))))))

Anonymous said...

Amy

You and your family are in my thoughts and prayers. Brooklyn is such a beautiful baby.

Debbie G(CT)