Well we went and had and EEG done yesterday to make sure Conner was not having seizures. After some screaming due to them measuring his head, writing all over it, putting cold gel and some goopy stuff on each spot marked, some little electrodes that supposedely suction to his head, all wrapped in an ace bandage, he finally calmed down for a nap. He slept through most of it. After that we saw the Dr. and he said he did not see any seizure activity. He also said he saw some spikes while Conner was sleeping which is a great sign. I guess that means he falls into a deeper sleep that some of these kids never reach. He said it was pretty normal. He also told us to keep our fingers crossed that he does not develop seizures later and that the fact that he has not already is promising.
The Dr. did however prescribe Conner a cranial molding helmet. Conner likes to sleep on a particular side of his head, and it has caused that side to be flat and misshapen. We will hopefully get that soon to correct that. I just hope it is somewhat comfortable for him and not hurt. I guess we will see.
I guess it's a good thing that we left town when we did. When I called Michael yesterday to give him the great news, he answered sounding pittiful. I asked what was wrong and he caught the stomach bug that both Randy and Emma had the day before. So we are staying in Ft. Worth an extra day to try to avoid that and get some Christmas shopping done.
Friday, December 19, 2008
Monday, December 15, 2008
Almost time for another Dr. visit...
Well we travel to Ft. Worth yet again for another Dr. visit on Thursday. This time it is the neurologist. We will be having an EEG done to see if Conner is having any seizure activity. It seems as if he has been staring off into space lately (might be absence seizures), but it usually only happens when he is sleepy. Since he sometimes sleeps with his eyes partly open it's very hard to tell. He also had a swallow study done before Thanksgiving that went awful. Hendricks is a great hospital, but they are completely ill prepared when doing a swallow study on a small child. We have decided to wait and have another one done when he gets better head control and starts to tolerate sitting for longer periods. It will also be done at Cook Children's.
He has been making great advances in his physical therapy lately. He can sit with assistance and hold his head steady for several seconds now. He also will lift it longer and higher during tummy time and continues to roll over. So we'll keep working on it.
His respite nursing will begin soon. I'm kind of nervous about that. I have not left Conner with anyone besides Michael, his Nan, or his Grandma so I think it will take me some time to trust this person watching my son. We will have 19 and 1/2 hours per weeks. That will give me uninterrupted time for my transcription and school work which will be nice. I can also go to Walmart without spraying everything we touch with lysol to keep Conner from getting sick.
Roo had puppies on the 6th of December. They are getting bigger and whine quite a bit. I'm ready for them to be gone already. We have promised two of them to certain people, only three to go. They should be ready around the middle of January.
Tuesday, November 25, 2008
Story of Conner Garett Barbee
The test came back positive after three months of trying. Michael was hunting so I decided to text him with the news. I knew he would not answer the phone if there were any deer near his blind. He was so excited. Family happened to be in since it was close to Thanksgiving. We decided to go ahead and tell everyone. So we sat in the dining room while everyone was playing apples to apples and dropped the news. Everyone was excited for us. The first couple of months of Dr. visits went well. Everything seemed to be progressing as normal. At 20 weeks we saw a specialist to determine the sex and finally had our answer...it's a boy. We went back at 24 weeks to ensure everything was still progressing as it should be. We got the scare of a lifetime. The Dr. said the ventricles in Conner's brain were enlarged, and that his stomach was measuring smaller than normal. All of a sudden joy turned to panic when he advised we do an amniocentesis. I thought, I'm only 26, why do I need one of those? Anyways the test was done immediately and we began the long greuling wait for the results. After about 2 weeks all results were in and nothing came back as odd. The Dr. decided to send me for a fetal MRI. That was interesting. Everyone who has ever been pregnant knows that lying on your back for too long makes your legs and arms go numb. To top it all off Conner did not enjoy the noise and moved constantly so it took about an hour and a half to complete. When the results came in, the Dr. said that Conner was missing a very large part of his corpus callosum (the area of matter that connects the 2 halves of the brain). We continued to go and see this specialist about every 2-4 weeks to keep an eye on things.
Three weeks before my due date, during church, I started to have some really sharp pains. We decided to go home and time the contractions. I was not sure if they were acutal labor pains or not. Margarett said they were and it was time to go to the hospital. Of course I insisted on eating first. I had heard too many horror stories of women have 24 hours of labor and no food. After a Subway sandwich I was checked into the hospital at 2:30pm. I was checked by the Dr., my water was broken, and at 7:30pm Conner arrived. He was 18 inches long and weighed only 4lbs. 8oz. We knew something was wrong with him, but no Dr.s in Abilene were able to diagnose him properly. Two days later he was flown on a helicopter to Cook Children's Medical Center in Ft. Worth. That was very hard and scary for me.
We quickly packed our things at home and headed that way. Conner was taken care of very well there. They quickly had a neurologist and a genetecist see and test him. His genetic testing came back positive for Miller-Dieker Syndrome. This is a micro-deletion syndrome where the brain is smoother than it should be (lissencephaly), seizures are almost always evident, and developmental delay can be greatly impaired. Of course this was very hard for us to accept and understand. We were also given the news that we would have to be tested to ensure that subsequent children would not have a high risk for the same syndrome. Luckily we found out that it was a fluke and just happened by a very rare chance. Conner was also having trouble eating. He would choke and silently aspirate when he drank from a bottle. We finally opted to have a g-tube put in. That has been well worth it. He is now almost 12lbs. We stayed at Cook's for almost a month, and were very happy when we finally got to go home.
Since then, Conner has been doing very well. As I mentioned before, he has gone from 4lbs. 8oz. to almost 12lbs. We have not seen any seizure activity as of yet. Keep your fingers crossed and pray that we are one of the few that will avoid that part of the syndrome. With the help of our physical therapist, Conner has been doing very well on head control and rolling over. He has also been grasping things and sucking on them. We also have a swallow study scheduled for tomorrow to see how well he will do with thicker foods like rice cereal. I gave him some last night, and he did not choke at all. He quite enjoyed being able to taste something.
Having a handicapped child definately threw us for a loop regarding our plans, but he has been the biggest blessing that anyone could possibly receive. We love him very much.
Three weeks before my due date, during church, I started to have some really sharp pains. We decided to go home and time the contractions. I was not sure if they were acutal labor pains or not. Margarett said they were and it was time to go to the hospital. Of course I insisted on eating first. I had heard too many horror stories of women have 24 hours of labor and no food. After a Subway sandwich I was checked into the hospital at 2:30pm. I was checked by the Dr., my water was broken, and at 7:30pm Conner arrived. He was 18 inches long and weighed only 4lbs. 8oz. We knew something was wrong with him, but no Dr.s in Abilene were able to diagnose him properly. Two days later he was flown on a helicopter to Cook Children's Medical Center in Ft. Worth. That was very hard and scary for me.
We quickly packed our things at home and headed that way. Conner was taken care of very well there. They quickly had a neurologist and a genetecist see and test him. His genetic testing came back positive for Miller-Dieker Syndrome. This is a micro-deletion syndrome where the brain is smoother than it should be (lissencephaly), seizures are almost always evident, and developmental delay can be greatly impaired. Of course this was very hard for us to accept and understand. We were also given the news that we would have to be tested to ensure that subsequent children would not have a high risk for the same syndrome. Luckily we found out that it was a fluke and just happened by a very rare chance. Conner was also having trouble eating. He would choke and silently aspirate when he drank from a bottle. We finally opted to have a g-tube put in. That has been well worth it. He is now almost 12lbs. We stayed at Cook's for almost a month, and were very happy when we finally got to go home.
Since then, Conner has been doing very well. As I mentioned before, he has gone from 4lbs. 8oz. to almost 12lbs. We have not seen any seizure activity as of yet. Keep your fingers crossed and pray that we are one of the few that will avoid that part of the syndrome. With the help of our physical therapist, Conner has been doing very well on head control and rolling over. He has also been grasping things and sucking on them. We also have a swallow study scheduled for tomorrow to see how well he will do with thicker foods like rice cereal. I gave him some last night, and he did not choke at all. He quite enjoyed being able to taste something.
Having a handicapped child definately threw us for a loop regarding our plans, but he has been the biggest blessing that anyone could possibly receive. We love him very much.
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