Addie’s special instructor from Shelby Arc came to see her on
Wednesday and was very pleased with how attentive Addie was. She said Addie was watching her friends and teachers and was following them visually as well as auditorily. She said Addie was being “Miss Nosey” by wanting to see all that was going on around her!
Yesterday, the therapists at The Bell Center were very pleased with Addie’s attentiveness and vocalization! We are currently working on encouraging Addie to roll completely over, helping her to sit up straight (assisted), to push up on her hands while on her tummy and to increase her focusing and tracking as well as reaching for and grasping objects.
Yes, it's a dress AND it's PINK...Addie has an upper respiratory infection (or as I call it: “daycare cooties”) and is just miserable. She developed a high fever last night, which prompted me to call the nurse. I wasn’t overly concerned about her symptoms, but more worried about her fever climbing and possibly causing a seizure. The nurse told me that we should go on and take her to Children’s. She also told me that regardless of Addie’s symptoms, any time Addie ran a high fever they would have us take her to Children’s just because of her diagnoses. This visit to the E. R. really wasn’t that bad in the whole scheme of things. The most frustrating part of the night was having to spell and explain to each doctor what Addie’s (secondary) diagnosis was. I am just amazed that pediatric specialists have never heard of her condition.
I have been struggling trying to decide if I felt comfortable sharing Addie’s diagnoses with people who asked. More than anything I am very afraid of the stigma that people will immediately associate with it. I ran in to a co-worker on Friday who asked about the diagnoses and I decided to go on and give details but asked them not to say anything to other people about it. When I got home I told Chris about the conversation and he made me realize that there are so many of you who are praying for Addie and who genuinely care about us that you would only use the information given to you to pray harder and to make the prayers more specific. It is virtually impossible for me to talk to anyone right now about Addie, but I am so thankful for you all. Everyone has been so kind to us and each and every prayer is appreciated and needed.
The "Blazers" won 14-5!
I am overjoyed to announce that Addie has met her three-month milestones. She is following a moving object with her eyes, she is able to hold her head up, she grasps objects that are placed in her hands (she is so strong!) , she continues to coo, is well on her way to babbling and is trying really hard to hold a conversation! This is just one more step towards proving the doctors wrong. I need accomplishments like this to keep me going! Someone made the comment to me that I’m putting Addie through “Baby Boot Camp” and I guess I am. She works so hard all the time and I am so proud of her!
Addie is still doing well on day four of daycare…much better than I am! I go see her at lunch, which breaks up the day for both of us.
My prayer requests have changed a little. Instead of praying for Addie to remain seizure free, I now pray that the seizures will be infrequent and mild if they must occur. I also pray that Addie continues to meet her milestones.
Thank you all for praying for Addie. It means so much to us!
Addie was practicing rolling from her back to her side when Thomas couldn't resist the opportunity to love on her...or to be loved on!
Ten weeks has now passed in a blur and amazingly enough life outside my little world has seemed to go on. I start back to work this week and Addie starts daycare. I can’t say that I’m looking forward to either one. With Addie going to The Bell Center two days a week, receiving additional therapy at daycare, me working with her at home and her being around “typically developing children” at daycare I am very hopeful that she is going to beat all the odds. I know that as time passes, life happens. People experience new things in life and prayers for my Addie will start to diminish. I beg all of you to please continue to pray for her. I can’t say enough how much it means to me. I want so much for my posts from now on to be nothing more than rejoicing in the milestones that Addie meets rather than the disheartening news that we have been receiving.
Chris spent yesterday morning taking apart all of Addie’s toys and cutting the wires to the lights. We didn’t realize that even the lights in a child’s toy could cause a seizure in a child that was at high risk. I have asked many of you over the last few weeks to pray specifically that Addie continues to meet her milestones and also that she remains seizure free. I didn’t realize in the beginning what a devastating affect seizures could have. For example, I was told that if Addie were crawling, walking or talking and she began having seizures the seizures could reverse those accomplishments. She is doing so well and I can’t imagine that being taken away from her.
Julien and friends at their big play, "The Commotion in the Ocean". I was so proud of Julien for remembering his lines!
Today we completed Addie’s evaluation with The Arc of Shelby County. This agency will go to Addie’s daycare and provide occupational therapy, physical therapy and speech therapy services at no charge to us, due in part from funding by The United Way (I never imagined all those payroll deductions would one day benefit my family). These services are in addition to the services that Addie receives at The Bell Center! This is wonderful news for us, we are grateful that there are so many services available to her!
Yesterday I met a group of people who have shown amazing generosity and kindness to my family although we had never met. I am in awe at how a situation that is so devastating can bring about the best in people. Everyone that I met was very kind, but as I was on my way out the door a gentleman stopped me to let me know that I shouldn’t always take to heart what these doctors are telling me. This man was not given much hope at birth and the doctors told his parents many things that he would never do in life. He graduated college, holds a full time job and although he may be in a wheelchair, he is a sincerely compassionate man and has proven the doctors wrong. His words brought about more encouragement for me.
It’s funny how things will run through my mind and I realized yesterday that the only difference between these doctors and the rest of us is the amount of student loan debt that is accrued. They can rip my heart out and try to take away my hope for Addie, but they don’t know what the future holds. We will have to continue to pray every day, leave our Addie in God’s hands and “wait and see”.
Thank you for your prayers.
My sweet girl had a very busy day! We spent the day by having lunch at one of Addie's favorite restaurants, then I took her s...
