As I sit here looking back at my calendar, everything becomes a haze of memories. I can't decide weather to tell every little detail or skip some of the daily struggles. I think I should start by saying at this point Drake is still only less than 4 weeks old.
My mother(Marian) began coming every weekend to help with the laundry and rocking of the baby. She also accompanied me to several doctor appointments. It seemed great to have an extra set of ears to hear all the information thrown at me so I could go home and explain the best I could to Shane. He went to as many doctor appointments as possible, but that became MY full time job. Shane went back to work after Drake was two weeks old. He has been the BEST dad/daddy/father any child could wish for! He continued to work 7 days a week and still not complain when I needed him in the middle of the night to help.
My best friend Kennette started coming to rock Drake several nights from 9 p.m. till midnight. We would set an alarm clock to get up for her to go home. It was the one way she thought she could offer relief before the all night crying spells began. (At this point it seemed Drake would cry even when you touched him.) My mother-in-law(Carole) helped during the weekdays weather it was to listen to me or share a cup of coffee. I also had a baby nurse(Ms.Thelma) to help. She was there to hold Drake through the nights while we tried to settle back in to reality. Now that I look back it sounds like I had it made. Maybe I should have bought a box of bonbons and enjoyed it. For some reason though the sound of your child crying consistently took away from even the simple things!!! Even the joys of a newborn.
So the doctor appoints started flowing like hot lava. You could see them coming, but couldn't run fast enough to get away and there was certainly no way to stop them. After the appointment with Dr.Kirse(ENT) at Brenner Children's Hospital, we decided to have all possible doctors in one location. It would take a year(or two) to tell about all appointments held. I will do my best to summarize the majority and hit on the important stuff. Looking back at my 2005 calendar, Drake had an 1-3 appointments every week for 17 weeks in a row.
Dr.Hill (gastroenterologist) was an important doctor. Little did I know at the time he would be the one to play a key part of Drake's well being. He began putting him on Previcid to help with reflux. It seemed he was on a different kind of medicine from the pediatrician and Dr. Hill said sometimes it's known to cause headaches. Great, first I was starving my child, then providing headaches. He did reassure me this wasn't colic, I'm wasn't sure if this was good news or not, since colic usually subsided at some point in time.
The next set of people we started seeing was at the CDSA(Children's Developmental Services Agency). This is a place where Guilford County provides services for families that need help. I remember talking on the phone, in desperation, to a woman who was an Occupational Therapist. Her name was Kim Millsaps, she began to give me tips on getting Drake to use his bottle better. He seemed to not enjoy taking his milk like most children. I thought wow, here is someone that deals with this daily and I had never even heard of what an OT does. We went to visit the CDSA for temporary therapy with Kim. Silly me,thinking "we won't need such help for long". There we were introduced to Nancy Norman (head of the CDSA) who showed our family they really did care about Drake. And then Brooke Juneau with Family Support Network / M.O.M.S.(mothers of miracles).
We were assigned a "case worker" Carmen Ward. Yet another angel sent to us. I knew there was a long list of doctors and therapist for us deal with, as it turns out God gave us Carmen to over see the beginning of this endeavor. She began setting us in place with all the help we could get from therapy to support groups to contacting doctors when I didn't think I could make one more phone call. I was told she would be with us till Drake was 3 (CDSA protocol). Once again thinking, Yea Right, we won't need it that long.
Sometime in between all this, we began seeing the Audiologist(Claudia Mason) who helped get Drake his hearing aid! Which by the way took him 2 years to decide sound wasn't such a bad thing. He cried at every appointment which made it very difficult to see if he was adjusting to the sound the BAHA hearing aid offered!
Next,the Geneticist (Dr. Tamison Jewett), she proceeded to explain to us the unknowns of Drake and her deepest concern for his well being. She is doctor which has true compassion for her patients and took two hours explaining Drake's abnormalities and unusual features. That wasn't an easy appointment either, but one of importance. I guess this is where I realized we had a child with "Special Needs". You NEVER think you are going to hear those words come out of your mouth when taking abut your own child! I don't guess there is anyway of preparing for such moment. Drake decided he would be full of "moments"!
We saw the Cardiologist, Urologist, Physical Therapist, Nutritionist and a Develpomental Pediatrician(Dr. Mary Christiaanse, I'll tell her tale later) all with little excitement! Which was a good thing in my book since no news was good news! We even began Drake on Massage therapy(Wendy Cheek). She would come to the house out of the kindness of her heart to work. It was the first time I recognized Drake could relax. We joked it was the "Jesus Position" for him. After he finally let go and relaxed, he would lay there flat on his back with both arms spread eagle. I thought to my self what kind of drugs does she give him. Nothing it turns out, but there was this stuff called "Gentle Baby". It cost $75 for a half ounce bottle, I would have painted all the walls in my house if I could have. It was truly liquid gold, some sort of essential oils that seemed to help when Drake smelled it. Only a couple drops on your finger tips would do!
The optomologst(Dr.Weaver) proceeded to tell us how difficult it was to determine his ability to see. This was one doctor that got a zero in field of personality. He wasn't very polite or personable, which seemed odd since ALL the doctors till now went out of there way to explain there views of our son. He was actually down right abrupt, and it was like pulling teeth to get answers. After a couple months of once again consistent crying, at each appointment, he explained Drake was blind and might have no vision AT ALL! This was the first time I went for a second opinion at Duke to see a Dr. Buckley. He explained that Drake was in deed blind, but to what degree couldn't tell. He assured me that Dr. Weaver was one of the finest doctors he knew and thought Drake was seeing (funny analogy) one of the best. So I decided to put aside the personality conflict and settle for a great doctor. But for those of you that know me well, I did have to tell him that I'm not going to settle on being told the bare minimum about my son and that my questions need to be answered with out argument! Since then we have gotten along beautifully!!
There was also the plastic surgeon(Dr.Argenta) who needed to see his ears. The shape and placement would be something to keep a measure on. He said when he was 5-6 years old we will talk the possibility of surgery along with Dr. Kirse. This will be an on going observation to deal with of Drake's deafness. Dr.Kirse had previously ordered a CT scan where Dr. Argenta found Drake also has a submucus cleft pallet. This is where he has a cleft pallet, but covered by a normal shaped mouth. We were told he would check back also in 5 years with this. There is a 50/50 chance weather children need surgery for this. Yet, again another reason he probably couldn't suck on the bottle well. Drake was also found to have a floppy pallet and narrow passage ways, the reason he sounded like he snorted and had a week cry all the time. The doctor was also concerned with Drake's head size(microcephaly) and shape. There was little opening at his soft spot(fontanel) and referred us to the neurologist.
No comments:
Post a Comment