Saturday, November 14, 2009
He said he feels great. We are going to lunch on Monday, we get pizza and salad, he gets soup...but that's okay, we are excited to see him after a week as the swelling was still there last week.
I will be taking more pictures. Hopefully these I'll be able to post because as promised, I told him no swollen jaw pictures on the blog.
He is so brave!
Sunday, November 1, 2009
I have great faith in this surgeon to do a fantastic job. As always I am worried about Brian going under anesthetic and recovery. He is strong now though and will do fine. I can't wait to see my precious son when it is all over with. Brian has endured so much through out his life. I am very proud of him and how far he has come. As with many children I know he could always do more and wish he had applied himself more at certain times. However, Brian is a very good kid and stays out of trouble. I couldn't ask for more than that. He is maturing and growing up.
Please keep Brian in your prayers as we embark on a change. Prayers that he can handle the change that will occur as it will change his face, but only for the best.
Monday, June 29, 2009
Thursday, May 21, 2009
We were sent to see Dr. Lawrence Lenke at St. Louis Children's Hospital. They immediately put Brian in a back brace.
Brian's first backbrace he started wearing when he was just 14 months old. He had to wear it anytime he was upright. As he grew they made a bigger one. You can see they had to cut a hole in the brace for his feeding tube as it made feeding much easier and more comfortable for him.
As Brian got older his curve got worse. We tried going to Shriner's Hospital for the surgery, but they did not have an ICU and were afraid to have Brian there for any surgeries. So we stayed at SLCH.
This photo was taken while at Shriner's. By the time they decided to some some surgery, his spine was at 67 degrees. No wonder he had a hard time walking...besides the muscle tone.
They chose to put a growing rod in Brian's spine. This allowed them to get as much growth out of his back before doing a spinal fusion. In May 1996 he had his first growing rod put in. As he grew he had more surgeries where they would stretch his back along this rod and hook him back up to it, decreasing the curve for a while. I can't remember how many times he went through this, but finally in 1997, when he was 5 years old and in Kindergarten, he had his spinal fusion done. He was flat on his back for 3 months (he also had a wheelchair that reclined). He missed three months of school. After three months he remained in a back brace while in the upright position for another year. After that, he was brace free. He had a special brace he even had to wear in the bathtub. (I still have this back brace in his closet.)
Here he is about 4 years old playing with his cousins. The brace really did not stop Brian at all. (side note: He didn't walk until he was 2 years old and had tubes put in ears.) He wore the backbrace all the time. We had to buy bigger clothes for him to fit over the brace.
At this time he was still misdiagnosed and using a walker and still having the feeding tube. One day Brian had a huge welt forming on his back. We immediately called the doctor as puss was coming out of it. They took us in immediately and squeezed out about 50 ml of puss. It was so gross. They told us to go home, pack a bag, and get back for surgery that night. He had a staff infection and they had to stop it before it got to his bones. Surgery went fine and he went home on IV antibiotics. This happened several times over the next two years. They felt his body was rejecting the rod that was placed for the fusion. They were debating on whether they should take the rod out since the spine was fused. (Luckily during his most critical hospital stay he was correctly diagnosed and started on his mestinon. He has not had a staff infection ever again!!!)
UPDATE: He continues to this day to have the rod in his back. He still complains about back problems and pain. Once every 2 years he sees the surgeon for xrays. He will eventually need more surgery on his back as the lower part of his back that was not fused is now curving and his hips are out of line. The dr. feels he should wait a few more years for this surgery.
Sunday, May 17, 2009
However, life at home has been a lot calmer with Mike, Nico, Luca, and myself. The fighting is gone and the boys are happy. I saw Brian over mother's day weekend and we talk a couple times a week. I will see him again in a couple weeks. With him working during the week and me working weekends our time is limited. I have come to realize he is growing up and at least I know he is at his dad's and not out on his own or living with some other kids. I just keep praying he realizes what a special person he is and does something worthwhile with his life and takes care of himself.
I will continue his journey with Congenital Myasthenia soon.
Thursday, February 5, 2009
Our first few months went smoothly. As mentioned before, Brian would have what we began calling, "fits". We would feed him via his g-tube and soon he would be crying and really upset. After about 15 minutes or longer he would be exhausted and just fall asleep. It was scary as we just figured he had colic and would try to calm his stomach. He was actually refluxing and choking on the formula as it went back into his lungs. My poor baby! (We didn't know at the time that was actually happening).
During the week of December 15 I was working midnight shift. Brian's dad, M, was home with him in the evenings and overnight. Brian had been running a fever that day and not feeling well. We were giving him tylenol for the fever and hydrating him via the g-tube. That morning I called his dad prior to leaving work to see how things were going. M told me Brian still had a fever and he was going to give him some tylenol. I was on my way home.
By the time I got home, Brian was very lethargic and pale. He was not moving much and M. told me had a hard time giving him the tylenol as we would put that directly in his mouth with a dropper, but Brian couldn't swallow it.
Some how instinct kicked in and we both jumped up, grabbed Brian and ran to the car. Something was obviously not right. Lucky for us the hospital was a quick 5-8 minute drive from our house and there was no traffic (as the intersections were horrendous at that time). We went through the red lights cautiously, honking our horn and looking both way.
We ran into the hospital and an attendant took us to his cubicle and started asking us questions. He got as far as how old is he and said, "He is blue, get him back here!" (I am tearing up now just remembering this whole incident).
Immediately a swarm of doctors and nurses were on top of Brian. M and I were pushed back and told to wait outside. We had NO IDEA what was happening in the room ....just that many people were working on our little angel. This hospital (Christian Hospital NE) was not really geared toward small children, but they actually saved our little boys life. I can't remember how long it took them to get him stabilized, but once they did he was transported ARCH Helicopter to Cardinal Glennon Hospital. M and I frantically drove the 40 minutes to one of the best children's hospitals in St. Louis. (We are very fortunate to have some of the best hospitals and research facilities around).
We arrived and Brian was in the emergency room with a tube going down his throat, hooked up to a machine that was breathing for him (as we came to know as 'intubation'). He had IV's everywhere and was out of it (they sedated him to intubate him and keep him comfortable). I was so scared for my little guy and so clueless as to what was going on.
The doctors asked us lots of questions we could not even answer due to his adoption. We didn't have a big family history on him or know really anything about his birth parents healthwise in any way, shape, or form. All we had to go on was records from his birth and his previous 6 months.
He ended up being hospitalized this time for 21 day, 15 of them in PICU. Whew! Nothing like living in the hospital waiting room. Lucky for me M. worked days and I worked nights so someone was always able to be at the hospital. Christmas came and went with us sitting with our sweet angel at the hospital. All his gifts were waiting for him when he came home.
Brian was such a good sport about being hooked up to all the machines they kept him on low sedation. His dad and I were always by his side; except when the dr's did rounds. He would lay in his bed and play with balloons and watch his favorite TV show of the time, "Barney", while we waited for his cold to dissipate so he could get off the ventilator.
They tried frequently to get him off the vent, thinking he was doing better, only to find he still couldn't clear the congestion from the cold....yes, he only had a cold....no pnuemonia was found in any of the xrays. They tested for cerebal palsy and many other things. They could not give us an answer as to what happened.
The only conclusion they could come to from looking back over the records they recieved from the hospital where he was born was that they believed he had Freeman-Sheldon Syndrome. We found out the dr's in his birth place believed this is what he had when he was born. He had been sent to St. Louis Children's Hospital to see the genetisits there (This is when I met his BM at the hospital and the day she relinquished custody) to be evaluted by one of the best in the area. HA!! Was he wrong - in so many ways!
So.....the diagnosis then was Freeman-Sheldon Syndrome (also known as Butterfly Face). That is what went in his records for years to come.
M and I looked the syndrome up on line and found it was extremely rare. They also had pictures of kids with it, but really none of them looked like Brian. The doctors were totally guessing and we did not know any better. Basically there was no treatment for it you just learned to live with it. Well, learn to live with it we did.....with many more interesting fun times to come.
When we finally got home we were so grateful to have our little boy alive. We almost lost him. I can still picture the hospital registration guy in his blue scrubs saying, "he is blue, get him back here!" and my heart just falling to the floor, but my body going into defense and save my baby mode!
I will post the only picture I have of this hospital stay and that was of Brian getting baptized. We waited until he was off the ventilator to do this. He is so precious and angelic. (At that time I was not so much a scrapbooking addict as I am now or I would have had more pictures even though they may not have been pleasant to see in the later years...they are memories ever pressed in my mind).
Sunday, January 25, 2009
* high arched palette
* unable to unbend his legs fully (they said he must have been cramped in the womb and no room to kick).
* unable to open his hands all the way without help; notice in the previous pictures how his pointer and pinky stick out and the rest are curled under.
* poor muscle tone overall; especially notable in the face; he couldn't suck on a bottle and no gag reflex. He couldn't hold his head up well.
* at about a year we noticed one side of his chest appeared not as developed as the other (this was the doctor's explanation when I questioned how something didn't look right)....turned out he had scoliosis due to the poor muscle tone (more on that in a later post).
* unable to eat any solid foods
* no smile on his lips....but definitely could see his smile in his eyes---they sparkled so.
* frequent refluxing of his feedings (however, we were clueless for a while as to what was going on there too)
* never crawled; rolled to get where he wanted to go (more on that later too and how we helped him there).
* any kind of cold would send him to the hospital in respiratory distress. (unable to cough up the congestion in his chest or even breath through it)
Monday, January 19, 2009
We started looking into Catholic Charities and other agencies in our area. We even looked at foreign adoption. The expense of foreign adoption was too much for us at the time, so we put ourselves on the list at Catholic Charities. Well, we didn't even really get on the list, when I received a phone call from my sister-in-law that she knew someone who had a baby boy, but could not keep him. The state of IL was involved and getting ready to take him away and put him in foster care. She said if we wanted him the mother wanted us to have him. Immediately I called M. (my husband) and we agreed, we needed to meet this little boy. The timing was too perfect.
The next day, June 1992, we drove an hour from St. Louis to a town in IL and met the birth mother and her little boy, Brian. He was 3 months old at the time. I fell in love immediately. At that time, we knew he had a feeding tube and that he had spent the first 6 weeks of his life in the hospital. He had a feeding tube put in his first day as he had no gag reflex and could not suck on a bottle. The BM had a job that kept her away from home and another girl's mom would watch Brian while she was away. This woman could not keep taking care of him because of his needs. I believe the state got involved when she was unable to pick him up from the hospital when he was ready to go home. He was hospitalized at one point for a urinary tract infection and then on meds for a month after that.
He was alert and happy. A very content little guy as we played with him and talked with his mother. We wanted to be sure this is what she wanted. She was sure. She didn't give us a lot of details about his health, but she did say they did genetic testing in Springfield and they didn't find anything. I didn't notice anything unusual at the time, except that he was small. He only weighed 6 pounds at 3 months of age. His records show he was 6 pounds at birth. We chalked that up to him not getting enough to eat through the feeding tube and where he was living. Of course, as my first child, I was awestruck that he could be mine!!! It didn't matter if there was anything wrong, he could be my son. Looking back at pictures now, I realize how pale he was and other signs we became aware of later on. (However, it woudn't have mattered).
Brian with mom and dad the first week he was in foster care.
He weighs 6 pounds and is 3 months old.
Ugh, please ignore my hair-do!
His BM (birthmother) told us she went into the hospital thinking she had appendicitis and came out with a baby! She did not even know she was pregnant. She told us she was a healthy person and didn't drink. We don't really know the whole truth of what happened during his 9 months in utero as she didn't even know. We also don't have information on the BF.
We left our meeting, with her taking Brian, and us driving home. The next day we contacted an attorney in MO and IL. At that time, in MO, it was not good for you to know or have met the BM. Luckily in IL it was okay. We decided to use the atty in IL and finalize the adoption there. The other good thing about IL was that if we would have lived there we could have fostered him until the adoption was final. In the meantime though we had to wait for the BM to come back into town. She had an appt. at St. Louis Children's Hospital with a genetists. The social worker was taking her and if she didn't show up than the baby would be taken (and we would not get him). We waited frantically for phone calls from BM to tell us she was back. It was the night before the appt. I was scheduled to meet her at the hospital to see the dr. with her. We then had an appt. to go to the atty's office and court house. She was going to sign her rights over. I didn't sleep all night as I was so afraid my baby would be lost to the foster system. At 3 am the phone rang. I jumped over M. to grab the phone. It was her and she was home. She would meet me at 9am at the hospital.
We had the appt. and the doctor reviewed the information from Springfield which didn't give any information. They looked at him and just basically told us, 'yes, he has a feeding tube because he can't drink out of a bottle, but nothing else is evident'. I called M. and told him the news. We proceeded to go to IL to complete the signing over of her rights as his mother. This is an experience I will always remember. She was so strong. She truely loved Brian, it was evident as she wanted to give him a good home with people who could raise him and attend to his basic needs in life. After the court signing we went to the atty's office and started the paperwork there. We cried tears of joy and tears of sadness. We hugged and she handed Brian over to me, he would be mine. She then left with her social worker. A foster home was found for him and I had to take him there. I did not come supplied with ANY baby items....no car seat, no clothes, no diapers...nothing. I had to make a trip to WalMart while the ladies at the atty's office watched Brian, (how weird that was). All turned out well. I bought supplies and we went to meet the foster family.
He went to a WONDERFUL foster home (they had 6 adopted children of their own). We were able to visit him as much as we wanted. It was an hour drive, but on weekends we would go to IL and keep him with us. The FM fattened him up (he got quite chunky thighs- I'll post pics later). I dropped him off that first day with the Foster Parents (FP) and went to work that night on cloud nine! The next day the genetists called me to give me some more information. They told me they thought he would be mentally retarded! I said, "how bad?" They said they didn't know that his facial features just didn't look right and he would probably have learning diasabilities. I hung up the phone and cried. I was so angry they didn't tell me that yesterday. Would it have changed anything, probably not, but now I didn't know what to do. I made it a point though to tell myself, that this little boy would get the best care imaginable and the best love out there and he would be okay. I would love him no matter what. I told myself the doctors were wrong. (And they were!)
Four months old. We had him for a weekend while still in foster care.
We then had to start the process of getting our homestudy completed and paperwork done for the adoption. After a few phone calls to Jefferson City urging they hurry with our background checks, we were in court with in 3 months to finalize the adoption. He came home to us forever at 6 months of age October 1992. We were excited to know we were going to have a first Christmas together. (Little did we know what was going to happen.....) Gotcha Day, October 9, 1992. Brian is 6 months old.
Weighs 15 lbs. 11 oz. (The foster family fattened him up)
During his 3 months in foster care though, he went through:
* a hernia (which sent him to the hospital and surgery). This was a very traumatic ordeal in that he was so dehydrated, they ended up sticking the IV in his bone to get him hydrated. We drove an hour in the middle of the night to meet the FP at the hospital in their town. An ambulance then brought him to SLCH for the night. He was released and scheduled for surgery the next week. We took him back to the FP that morning. He faired well the rest of the week. The surgery also went fine.
* he pulled his feeding tube (G-Tube) out (he had one in that had the long cord hanging down) and was swirling it around his head late one night, laughing and having a good time. This was another trip to the hospital in the middle of the night. The FP drove him to SLCH while we met them there. This was when we learned how to insert a new feeding tube and how it all worked. We were happy they put one in that was flat to his stomach...less chance of pulling it out.
* there was another hospital trip and I can't remember what it was.
I thank God for the wonderful FP he had. They were so observant of him and took just wonderful care of him. Another family that loved him immensely.
While in foster care we would continue to try to get him to drink out of a bottle by holding his mouth shut around the nipple. It would take him so long and he would be so tired and not really getting any food. Often, even with the feeds going in the feeding tube he had what we began to call 'fits'. He would suddenly start screaming and crying, get all snotty, and phlemy in his nose and throat, often times throwing up. Nothing would calm him, until he just wore out and would fall asleep. Little did we know he was refluxing and aspirating on his own food. It breaks my heart now to think about what he endured and we didn't know it. As first time parents and never having really babysat any children I wasn't real up on what babies were suppose to be doing and how to act. (I quickly learned).
Anyway, I'll stop here as that is our journey to get Brian into our lives. We had a few bumps up to that point, but the roller coaster was only going to get bumpier.
6 months old. He had such low muscle tone he couldn't hold his head up and leaned forward to sit. He is still as cute as can possibly be. He has beautiful, thick, blonde hair.
Sunday, January 18, 2009
I have found a few blogs of others with CMS so wanted to add another one. I have searched for others with the same syndrome as Brian so he could know he is not the only one out there.
Bear with me as I try to add old photos as I wasn't digital 16 years ago and will have to scan photos to add.
I'll still add information to http://www.babykingsadoptionjourney.blogspot.com/ as that is our family blog now that baby Luca is home, so check them both.