So as many of you know we have been dealing with a LOT over the past month with our little Buggy girl. Jess and I have talked about it several times and have finally decided to post about it. Although it is difficult to just put it out there and share we feel like it's HER story and we can't just leave it out no matter how much we'd like to. We also feel like sharing HER story will help others realize why we make some of the decisions we do when it comes to her...
This may be a little choppy so please pardon that...
At Delaney's 9 month appointment we discussed with our wonderful pediatrician that we were concerned with Delaney's right foot turning in and her inability to crawl, so she referred us to Dr. "G" an orthopedic surgeon for a consult. The appointment was overwhelming, awful, and crazy. He came in...told us that he noticed a significant weakness on her right side, that her range of motion was minimal, he was concerned about her slow growth, etc. He offered up several potential diagnosis that both engraged and scared us. We decided to ignore the crazy surgeon man and go back to our pediatrician to discuss further options. Along with our pediatrician we came to the conclusion that Physical Therapy would be a great option for all of us and it was through Jess' work so we could have the ability to really know the system. Well after about 3 weeks of therapy and a diagnosis of profound weakness on her ENTIRE right side, including her arm, hand, abs, back, leg, and foot...and THREE opinions of fellow Physical Therapists we decided to go ahead and get an MRI to rule out what they were seeing as signs of mild Cerebral Palsy. Jess and I had wrapped our heads around the possibility that our perfect baby girl might have CP. We thought...well if it IS cp then at least we know we can handle it. At least we'd know what it was...
So we went in for the MRI. Delaney was sedated which was probably the hardest part for me... We were told not to expect to hear anything back for at least three days and that if we had not heard anything near the end of the third day to call in and remind the doctor to ask about her results. After waiting for an hour and a half we were called back to hold our sleeping baby girl. It was definitely weird to see her completely sedated still. We picked her up and as soon as she nursed we left and headed to pick up the big girls at Jess' parents house. The ride took us about 20 minutes...well less than 5 minutes after walking in the door I was ON THE PHONE with our pediatrician who had called US! She started out the conversation saying that "just because I'm calling so quickly doesn't mean it's necessarily bad news". That was totally not the way to start a conversation with an almost frantic parent anyway. She said that the radiologist had called her immediately telling her that the MRI showed 2 nodules on her brain...one measuring 7mm. (A side note: Jess works in this hospital's NICU and when their emergent babies have MRI's it still takes almost 4 hours to have a radiologist read the scan and write the report...Delaney's was read and written within 30 minutes) I hung up the phone and was in utter shock. I tried to relay everything to Jess and her dad, but in all honesty I don't think I was listening very well after she said they found nodules...and that they could be cysts or tumors. Our pediatrician did say that she had put in a call a neurologist and would get back to us as soon as possible and if Jess had any questions she could call anytime. Well of course later that afternoon Jess decided to call and ask more medical type questions. I think the question/answer that scared us the most was when Jess asked "So do you think this could be something that tons of people are walking around with that doesn't cause any problems?" and our pedi's response was "No. There will be problems."
Our pedi called us back the next day to let us know she had spent an hour on the phone with a neurologist at Children's Hospital(where she has the scan done) and that he thought that her issue was something called Neuron Migration Disorder. Basically this means that around the 2nd month of gestation the brain separates into white matter and grey matter. What happens with NMD is that some of the grey matter did not make it out and is trapped. There is no treatment or cure. The only thing you can do is treat the symptoms through physical therapy, occupational therapy, speech therapy, behavior therapy, etc. From what they can gather they *think* it will effect her motor skills, coordination, language, personality, and sensory. We can see the motor and coordination now. We also see the language, personality, and sensory. She is not only weak on the right side but EXTREMELY sensitive to touch on that side. She is unable to self soothe...at.all! She doesn't have a single word yet. So we are expecting the next six months to be extremely telling in her abilities.
We went to see this neurologist...Dr. F was very flippant and was "not impressed" with her scan because it didn't show entire sections of her brain missing. Oh and there aren't two nodules...there are FOUR. The only thing he said that wasn't dismissing was that he said that every part of the brain has a function and we have no idea what the trapped parts were meant to do but whatever they are she won't be able to do or will have extreme difficulty doing. We felt very brushed off.
Once again we headed back to the wonderful pediatrician who said that we were very justified in feeling the way we did...that she would stay on top of everything with her and her goal is EARLY intervention. So instead of speech therapy starting once she doesn't have words by 2...our pedi wants to start it at 18 months. She wants us to continue PT indefinitely since walking is not in our near future at all.
So now after 10 pt sessions with our wonderful therapist M. she suggested that we get a referral to First Steps which will do in home therapies until she's 3! We have an evaluation scheduled for next week...
Oh one major part of the disorder that I left out is that 82% of these kiddos have seizures. This is probably the biggest reason why we have no current plans of moving her out of bed...and why we have no immediate plans of going out without her. I honestly could not imagine her having a seizure and me not being there...It is also why we were SO freaked out when she had three days of 104 degree temperatures because even in a "normal" child those high temps can cause seizures. I guess we are asking everyone in our "regular" life to bear with us as we navigate our baby's new needs.
It is so hard (and has been for months) to read other people's blogs, facebook statuses, and FF updates about how their babies are progressing. Clapping, playing games, talking, walking, crawling, sleeping, playing by themselves, drinking out of cups, blowing kisses, etc...we aren't seeing any of those things. We LOVE our daughter. We think she's perfect!!! We just have to get a new perspective and set of expectations for our little girl...and that takes time...
I think the hardest part is watching her face...she WANTS to talk...you can see it in her eyes that she knows what she WANTS to say...then she goes to make the noise and it's not what she wanted it to be and you just see extreme frustration and confusion. We also see her WANT to take steps and walk and have for months...but when she goes to take them she just can't...her coordination isn't good enough. It's hard to see her struggling and us not be able to help!
