Pulmonologist

Yesterday Connor continued with his busy week by visiting Dr. Khatwa (pulmonologist). We started out with a chest x-ray to look at his lungs. Connor finished with his antibiotics for pneumonia 6 weeks ago and they wanted to confirm that his lungs were clear of bacteria. Everything was clear!!!  Dr. Khatwa is hoping that Connor will be much healthier from this point forward and that the 2 cases of pneumonia and a sinus infection were related to the unknown aspiration and believes that now that the tonsils are out things should be better!  Great news. Makayla has had a cold all week so Connor should start showing symptoms anytime now. Lets hope it stays as just a cold this time =) Or better yet, that he avoids the cold all together.

Hematologist

Connor saw his hematologist for his 6 month checkup today. We started the visit with a long wait in the waiting area and I noticed how grown up Connor is now. Though he still crawls around as fast as he can causing trouble, he has a great time doing it and smiles at everyone else waiting to be seen. We were actually alone in the waiting room for quite some time today and we sat doing puzzles, reading books, and playing with a fun nursery rhyme vtech toy.

Big Boy!

The nurses decided to draw the blood themselves today instead of sending us down to the lab. I thought this would be great so we wouldn't have to wait there too, but she missed the vein on the first arm, and then needed 3 other people to help hold him down and entertain him while trying to stick the second arm. Connor is normally very cooperative and doesn't cry during his bloodwork, but after the sleep study last night I don't think he was very happy to begin with.

His numbers all came back perfect and we cleared for 6 months. I asked the doctor how long we would see her on a bi-annual basis and she said until he is 5 and then it will be annually. She explained that based on the tranisent leukemia at birth, Connor has a 30% chance of developing Leukemia by the age of 5 and then the statistic drops to about 10% chance.

Sleep Study # 2

Connor had his 2nd sleep study last night. He had his tonsils out at the end of November and they wanted to do a follow up sleep study 6 weeks later to see if he still has sleep apnea. As I have mentioned in the past, at the last sleep study it was discovered that Connor has Central Sleep Apnea which means that his brain is not telling is body to breath at time during sleep. While most doctors would say that this is not related to large tonsils, it was decided by several doctors that removing the tonsils would hopefully get rid of any Obstructive Sleep Apnea which in turn would possibly help the Central Sleep Apnea episodes as well. I feel that he has been sleeping much better since his tonsils came out, but I am not sure if that is just wishful thinking. We did not notice many symptoms before so not to much has changed, but he does seem to sleep much more comfortably. In the past, he was very restless and now he does not seem to move around as much. We should get the results in a few weeks and will go from there. I am trying to not worry about it in the meantime, but that is not always easy. If he does still have the Central Sleep Apnea, the doctors believe there may be a problem with his brainstem and would schedule a sedated MRI to look for the problem. Depending on the severity of the Sleep Apnea, Connor may be put on oxygen while sleeping until they find the cause and hopefully a permantent solution.

Connor went to the sleep study with Daddy this time!  Dad reported that he did well overall, but again did not like having all the leads and wires on him. They arrived at 7:30 and he was all hooked up and ready to go around 8:45. Connor was almost asleep when they were attaching the wires, but then got angry and didn't fall asleep until 9:30. He slept well until 11:15 when the technician came in to put the terrible thing in his nose!  As I know from the last time, Connor does not like this at all and stayed up until around 2:30!  Jeff said it was almost as if Connor was sleeping sitting up. He wasn't crying at all but could not get comfortable. He just sat up giving dirty looks! Hahaha, that is my Connor. The technician said he got what he needed and they were released at 6:30 in the morning. We are praying for good results!!

Morning after

2 year checkup

On Friday, Connor had his 2 year checkup with the pediatrician. It seems kind of silly to see the pediatrician at this point considering all the specialists we see, but I really look forward to his regular checkups. It is a nice to know that someone else has Connor's whole medical history all in one place and know that there is someone who follows all of Connor and not one specific body part. My favorite part of the checkup has always been height and weight check. I have always been interested in this even with Makayla. I am not really sure why, but I like to see how much they are growing and where they stand on the height and weight chart. When Connor was younger and we were going in for weekly weight checks prior to his heart surgery sometimes there was no change at all. For his first 18 months, he ranged from the first to fifth percentile for weight on typical scale and from the third to seventh percentile for height. At age two, Connor weighed 24 pounds 12 ounces which put him in the 15 percentile for weight on the typical scale and 32 1/4 inches long which put him in the 7th percentile. I actually thought he was going to be much closer to the 50th percentile because he seems so big to me now, but I am happy he is still a little peanut =)  Overall, the physical was fantastic and Connor is very healthy!  It is nice to have a fun doctor's visit every once in a while!!!!

Connor's Bday Party!

Connor had a fantastic birthday party. Thank you so much to everyone who made his day so special!!!

Happy 2nd Birthday!

I cannot believe my little baby boy turns 2 today!  It feels like just yesterday we were driving to Boston to be induced into labor. So much has happened over the last 2 years and I have learned so much about medicine, myself and life in general. Connor has taught me to appreciate each and every minute of every day. I have learned to not worry about the little things and always look at the bigger picture.

Connor has accomplished so much over the past year. At this time last year he was still working on sitting independently and rocking on his hands and knees. Since his first birthday, Connor has progressed significantly in his gross motor skills and has learned to sit on his own, commando crawl, pull-to-stand, speed crawl on hands and knees, cruise along furniture, and climb up stairs. Although he is not walking on his own yet, he has gained stability in standing and can do so with just a finger touching the coffee table. Once he gains the confidence to let go he will be off and running! He went from refusing to put any weight on his legs to walking while holding my fingers.

Connor is doing well with his fine motor skills and is determined when it comes to toys such as puzzles, shape sorters, piggy bank, etc. I am amazed at how well he is able to do those things when taking into consideration his problems with vision!

Connor is starting to make more sounds and has learned many signs over the past year including: more, all done, sleep, eat, milk, play, book, blocks, music, bubbles and bath. He is starting to pick up new signs very quickly these days so we plan on adding new ones each week. He has even started combing signs together and will ask for more book or more bubbles. Connor is also working on picture exchange where he makes choices after looking at pictures. He is doing ok with this, but he gives us these looks lately like he is saying "why do i have to choose the picture, can't I just get the toy?" 

Connor waves bye bye, blows kisses, gives the best hugs.  He loves to do the hand motions for the itsy bitsy spider and the wheels on the bus. He has developed quite the personality over the past year and has a very funny sense of humor. He does things everyday to make me laugh and can always make me smile.

I am sad that my little baby is growing up so fast but am so proud of all he has accomplished and look forward to watching him grow and learn in the upcoming year! Love you Connor =)

JANUARY 2010

JANUARY 2011

JANUARY 2012

Eye Doctor

Connor has a TON of doctor's appointments coming up over the next few weeks/months so I decided to summarize each of them so I don't forget anything! 

First off was a visit with Dr. Danielle Ledoux at Children's Hospital on Monday. She is a fantastic eye doctor! We previously saw an eye doctor at Tufts Medical Center, but she was much more personable and took the time to explain Ocular Albinism in more detail and answer some questions for me. The visit started out with a vision test having Connor locate various black and white squares on a larger rectangular type plate. Some were thick black and white stripes whereas others were very fine lines. He seemed to do fairly well with this test as I could see him scanning and searching for the image. The doctor briefly looked into his eyes and the put the drops in to dilate the pupils. Connor and I went back to the waiting room for 20 minutes and he spent the entire time crawling up and down the hallways like he was in a race! She looked into the back of his eyes and then sat down with me for a discussion.

Dr. Ledoux explained that Connor does most definitely have Ocular Albisim and recommends that we see a doctor in genetics. There is a possibility that Connor has Hermansky-Pudlak Syndrome which characteristics include Ocular Albinism and Low Blood Platelets. We had already discussed this with Genetics when we first got the diagnoses and were told that the genetic testing is very expensive at this point and would not be covered by insurance because if the doctors see that he has Ocular Albinism then he has it and there really aren't any other medical symptoms other than the eyes. I would definitely like to pursue it some more to get some questions answered, but we have as I said we have lots of appointments coming up so we will probably hold off for now!

The doctor advised that she gets a slightly different prescription for glasses than his current pair, HOWEVER, she does not feel is is absolutely necessary for him to wear glasses at this point. She said he is nearsighted and will need them as he gets a bit older, but at this point he sees his best when objects are within 2 feet and at his age most things he would need to see would be in that range. This was fantastic news for me because it is such a struggle to keep his glasses on! I know we are just putting it off for now, but at least we know we are not hurting him by not forcing the issue.

 

2011 Review

Wow, what a year 2011 was! Connor turned 1 in January and went from sitting quietly playing on the floor to crawling like a champ and getting into everything. He is now pulling up to stand and cruising around the furniture and constantly climing up the stairs =)  He had his adenoids out in February along with ear tubes and then his tonsils out in November. He has been for many tests and doctors visits, but continues to smile through it all.  Connor has met many friends through various playgroups and has introduced us to some amazing families. Makayla graduated from her 3 year old preschool program at Holy Angels in May and started pre-K at Atkinson Academy in September and she absolutely loves it. She has made some great friends and I think it is great that she loves going to school. She has continued with dance and gymnastics and is also learning to play soccer! Makayla learned to jump and almost dive off the diving board and was very close to swimming on her own by the end of the summer. We went on our family vacation to the beach as well as Disney World in August and all had a blast. It was my first time and I loved it as much as the kids! We made significant progress on our house addition and upgrades and have hopes to complete that in 2012. I think our family had a fantastic year!!!