A Gift from Above!!!

Yesterday was no ordinary day (as if we ever have one)! I had to go to Gateway to get parts to work on Drake's first "wheelchair" (some people call it a stroller, but at the $4500 dollar price tag, I think it deserves the name "wheelchair"!). It seems these chairs are only good for so many miles and we have put Drake's to the test on our dirt road, not to mention he's growing tall as a mad-man. By the time $500 worth of parts had been scraped, re-arranged and adjusted, teacher "T" walked in, looked at Drake's chair and asked teacher "A", "Do you think Drake would fit in L's chair?". A- looked at me and asked, "Did you know L?" And away T- went to get the unknown vice.

When she came back in the room, T- was pushing a "BRAND NEW" blaze orange wheel chair! It was spectacular!!! The color was perfect (one of my favorite colors for Drake too). They both said, "I think this might do!". I was told that this chair came from a boy who was at Gateway and had passed-away over the summer. And for those of you who don't understand, these chairs along with ALL special needs equipment, are expensive and custom ordered to the specifics for each individual child.



I went back at 2:00 that afternoon to meet with the teachers, therapists and vendor (who happened to be there this day). We sat Drake in this NEW chair to give it a try and see how if it would POSSIBLY fit. If he was a girl, I would have called him Cinderella with his new glass slipper! He grinned real big, he knew it was for him... specially for him!

Not only did it fit him PERFECTLY, but he was able to use every extra part WHICH was added. There is a head rest that he actually tries to hold his up to now (at least sometimes), there is a special place to put his switch plate so he can play on the computer, there is tilt in space (very important at sleepy time) and most importantly, there is a memory foam seat and back cushion to give his "tushy a little cushy"!!!



I still have to order a new bag to match this fabulous blaze orange and black beauty (maybe I'll call it the Orange Hornet). I swear, if I had the chance to order this $6,500 chair myself (and no those numbers are NOT typos), I would duplicate it! I'm not sure how to tell teacher T- thank-you for thinking of my son at such an opportune time. I'm trying to pull together the words to tell this special family that this chair will be loved and used to best of our abilities!


I just want to say thank-you to baby L- for giving this gift to Drake. You truly understand what it means to have a "big boy" chair to sit safe and sound in!!! Thank-you from the bottom of our hearts. God will take good care of you like I'm sure your family did here on earth, The Naylors

Happy 4th Birthday!!!

Who doesn't love Christmas in August? That was the theme this year for Drake's 4th Birthday! Please goto www.lifetothet.com to read the full story!

Pectus Excavatum

So I took Drake to the doctor yesterday. Regular old pediatrician to take a "looksie" at a little old rash. And yes, it was a little bit, well allot of the Fifth Disease. A common childhood virus. I'm not sure about you and what your worries are as a parent or even as you yourself as a patient, but I always have in the back of my mind that when we go for something small or a "well visit", there is bound to have repercussions. You know, you/your child ends up sick the next day or wined up going back the following week for something else.
Anyway, as we (me and the doc) were finishing the conversation about D's rash and not too much to do about it, he brings up the sunken place in Drake's chest. His pectus excavatum!!! He proceeded to tell me there is a doctor at UNC who does this Nuss procedure and that the doctor who invented it is just in VA. He said the youngest patient was 8 years old, I said we have 4 more years to worry? I was told we will keep an eye on it and that there will probably be x-rays in D's near future. He wasn't sure he could wait 4 more. I love it when the docs throw a curve ball! I guess I'll be calling UNC soon :(
Needless to say there was lengthy discussion and here I am at 12:14 p.m. writing about it after reading about it on-line. Here's is the quickie info on what I found and what the doc had to fill me in on. UGH!!!

Nuss procedure

The Nuss procedure is a minimally-invasive procedure, invented by Dr. Donald Nuss for treating pectus excavatum. He developed it at Children's Hospital of The King's Daughters, in Norfolk, Virginia. The operation typically takes 45 minutes.
Through two small incisions in the side of the chest, an introducer is pushed along posterior to the sternum and ribs, and anterior to the heart and lungs. Then a concave stainless steel bar is slipped under the sternum, through the incisions in the side of the chest. A third, smaller incision is made to insert a thoracoscope (small camera) used to help guide the bar. Taller patients, older patients, or patients requiring extensive correction may receive two or more bars. All bars may be placed through two incisions or additional incisions may be made. The bar is then flipped, and the sternum pops out. To support the bar and keep it in place a metal plate called a stabilizer may be inserted with the bar on one side of the torso. PDS sutures may also be used in addition to the stabilizer. The stabilizer fits around the bar and into the ribcage. The bar and stabilizer are secured with sutures that dissolve in about six months. Some surgeons have achieved excellent results using only pericostal sutures, without the use of stabilizers.[1]:1276,1280 Eventually, the bar is secured with muscle tissue that regrows during the recovery time. Although initially recommended only for younger patients, the Nuss procedure is now commonly used on patients in their thirties and forties with excellent results

Recovery
Recovery time includes between four and five days in the hospital typically, depending upon the patient and how the operation went, followed by time at home to overcome the pain and to let the bar settle into place. Patients younger than fifteen often require only two to four weeks at home after being discharged from the hospital for recovery, but older children and adults typically require a much longer recovery period due to the decreased flexibility of their bones. Fully grown adults may require many months before they can resume normal activities, including work. For six to twenty-four hours after the operation, the patient will have a Foley catheter to minimize risk of movement that could displace bar, and because the epidural can interfere with normal urination. The patient also receives thoracic epidural analgesia in the back for two to five days depending on patient recovery.
For six weeks, there should be no running or strenuous physical activity, and lifting is limited to ten pounds or less. Walking for exercise, and breathing exercises are recommended. It is sometimes suggested that weight-training should be limited or eliminated for up to three months. Also, it is generally accepted to not play sports where impact to the chest is likely, such as hockey or boxing. However, aerobic sports are encouraged, as results after bar removal are best maintained in patients who have stimulated their cardiopulmonary systems while the bar is in place

The previous paragraph is what made me post about tonight... The ENTIRE paragraph is a BIG F%*#?@! JOKE! Again, UGH!!!

At least for today!!!

So I was sitting there rocking Drake at 5:30 this morning (his usual wake time since birth). He does sometimes sleep in till 6:30, and yes... daddy gets his share of early mornings too!

Maybe I was tired that my husband was out of town(again), maybe I was feeling sorry for myself that I never get to sleep past 6:30 (except a few times in the past 4 years), maybe I was burnt out on watching my son vomit almost daily (if not twice daily) for over a year, maybe I thought about the fact that I would be changing his diaper for the rest of his life ( even when he's grown and too big to pick-up), maybe I was wondering if the doctors will ever figure out why Drake continues to have episodes of passing out, maybe I was feeling guilty that I'm tired of doing this already... and he's only 4.

Then what came on TV??? It was a commercial about some college or some store selling something to go to college. I don't recall which one, that's not important. It was a beautiful picture of this mom and her son; getting him ready for college, they had gone and bought some goods for his new dorm room, everything matched down to the cool metal trashcan, they were getting new books and moving him into his "new" life. Now I know this was a "picture perfect" scene, I know it was only a commercial, I know that college is expensive (no comparison to the costs of a SN child!!!), I know it always seems greener on the other side... but it still hurt.

I don't quite know why, I know I'll get to experience it with my oldest if that's the route (God willing) he chooses, but I felt sad for Drake (or mostly for me). I felt like I would still be sitting in that same green rocking chair in 14 years from now, rocking an 18 year old man. It sadden me to think he'd never be on his own and that my husband and I would never be "Empty Nester's". It hurt that I thought such depressing things.

When what do you know... the commercial was over, I looked down at that sweet angle pie who was finally asleep. Knowing he is safe in my arms, knowing that he is a happier child today than he was3 1/2 years ago, knowing that he never has to give a thought about being hungry, knowing that in his world "Life is Good", knowing that at any moment this could all come to an end and knowing that one day I will look back on these days and wish I hadn't wished them all away.

So as for today, no one will know the impact some silly commercial had on me. More importantly Drake will never know I had a tough morning with him... at least for today.

Complex Balanced Translocation

Meet Drake

46,xy,t (4;14;4;1) (q28.2;q13.1;q28.2q21;p31.3)

This is a picture of the drawing that was given to us while I was 20 weeks pregnant. It's Drake Complex Balanced Transloction. You won't see it anywhere else... and if you do please call me, I was told he's the ONLY one in the world with this "rare" chromosomal abnormality!!! I'd hate to think I had been slighted for the winnings of this lottery!

Tomorrow I get to go talk to a group of P.A. students. I was given a list of questions from a good friend S-. She use to be D's CNA and now has moved on to better her career. I knew she wouldn't stay around long, but while she did Drake was in good care with someone who loved him and cared about more than just the "patient"! She was always asking questions about D- and wanting to know what the docs had to say. To learn more. To be better than she realized she was! I know she will do GREAT at whatever she chooses to do with her life!

If only she could learn to be on time... she'll make a perfect doctor!!!

The interesting thing was after thinking about the answers to her questions, I decided to make an outline. Little did I know how much Drake and our family have been through in such a short amount of time (almost 4years). Little did I know the memories it would bring back. Little did I know how far D- had come and remembering the days when I never thought we would make it this far! The outline is more about my pregnancy and the "early days". It certainly isn't ALL the details, but maybe it will help me keep my thoughts in order while I'm up there talking to this group of students (& trying not to cry). You never know... one of them might one day be Drake's doctor. Better yet, maybe something I say will be remembered and kind words spoken to help another family in the "early days".

The days are long but the years short. -unknown

BAHA Hearing Aids

I forgot to mention back when D- was about 6 months old we were able to get him a hearing aid. The insurance company told us they don't cover hearing-aids... "It's considered a luxury"! Can you imagine? That was one of those moments when I couldn't quite understand if I was actually talking to a human being.

I was fortunate enough to be attending a program at Women's Hospital for pre-mature babies (even though he wasn't). Funny, I can't recall why D- qualified. Anyway there was a lady who worked there and happened to call me about something when we eventually came to the topic of insurance and that hearing is a luxury. Her son happened to be deaf and was told the same thing several years earlier. She said don't take no for an answer! That it's their job to say NO and it's my job to say NO back. (At least don't take NO right away.)

After SEVERAL phone calls, biting my tongue and enough tears to fill the tub, I won! Did I mention the aid was about $8000? They ended up covering 80%, it's was a battle won as far as I was concerned.

Drake @ 2months giving the BAHA a trial run!

Funny thing... D- HATED IT!!! Isn't that typical, to want something so bad only to find out it wasn't what you thought it was in the first place. Don't get me wrong, he still needed it and uses it, but it made him cry and to this day only tolerates it for a short time. That to will come in time and with therapy and good teachers and lots of patience, this too shall pass. But for a short moment I had victory!

Drake's hearing loss is called a "Bone Conduction Hearing Loss". His aid is a BAHA. As you might recall, he has no openings in his ears and we're waiting for him to turn 5 or 6 to get another MRI to see what has developed internally. Untill then he has to wear a handband with his aid attached. I don't blame him, I wouldn't want to wear that thing either (which is by the way VERY TIGHT)! He's such a trooper!!!

Party All Night.

It didn't take long after being at home to be exhausted... again. Since Drake wasn't swallowing well, it made it difficult to sleep though the night. Let me rephrase that, it wasn't difficult, it was impossible. It was like having a newborn again who couldn't only, not sleep, but not breath well either. We set Drake's bed in the living room so who ever was "on duty" could watch the TV and be near the kitchen (two important things to get through such trials). We already had the rocking chair in the living room so that helped as well. It was like a party all night long... every night. I don't remember even doing that in my 20's more than one night in a row.
Then there was the equipment that was sent home. The feeding pump itself, the IV pole, the loud obnoxious suction machine; then the bags, tube extensions, syringes (60cc & 10cc), tape and gauze. I didn't realize how these items would become a part of D's everyday life from there on.
D was not tolerating his "feeds" well. They stared him on a continuous flow. That meant the feeding pump was feeding him around the clock, 24/7. Yea, I agree, as much as I like to eat, that's a little too much for me too. So after about 4 days of him crying, choking and trying to vomit, I decided to cut the machine off for the night and continue in the morning. Guess what? He stopped crying and even got a couple hours sleep. Of course I was on the phone with the doctor first thing in the morning and they agreed to set up a feeding schedule to get him proper nutrition. ( I also didn't realize this would become an on going problem for the next few years...still going on as of 7/1/09)
I was able to set up a great line of communication (in other words, on a daily basis) with the feeding specialist, Dr.C-. She is a doctor who has made a difference in D's life. She not only returns calls, but thinks outside the box on ways to get your child to get the proper nutrition. I wish I had all the details of that written down or in my mind. We tried so many different volumes, rates, times, and formulas. Needless to say D is VERY sensitive and now we have added a "simple" stomach operation to help. I truly doubted myself weather or not I had done the right thing about having the G-Tube and Nissen done. Not that I had much choice with the whole aspirations thing, but as a Mom I still felt this horrible pain of guilt.
One thing I'll say and I've said it a over and over again. The doctors who care and especially the doctors who seem "too busy", don't have to go home deal with the trials of a special needs child. This is a life long process of trial-&-errors. It's physically, emotionally, and especially mentally draining. Shane and I have seen the faces of parents who older special needs kids. They all seem to look tired and drained. I guess after being up for 20 or more years, talking to doctors, battling with insurance companies, fighting for medicaid programs, trying to get the best teachers and therapists in the school system, testing witch drugs work and don't work, not to mention the everyday life epically if other children are involved. Can you imagine the parents who have multiple special needs children... WHEW!!! I think every doctor/intern should have to live with a family of a special needs child to see what really goes on when they leave the office.