Mason's 9 month well check-up

A recap from the last blog....haha! Forgot that I already did one from the 9 month well check up. Mason went in for his 9 month well check up on the 16th. Height is 23 1/2" long, weight is 14lbs 4 oz. They measured his head and it has grown considerably since the last check-up so the Dr requested we have a CT done. A CT was scheduled for Thursday. The results were sent to Dr Pauli so that he could compare it with the MRI. Mind you Mason woke up on the day we went to meet with his pediatrician vomiting and was just real moody. So with having that, his head circumference measuring large, I was in panic mode. He finally stopped vomiting on Sunday night. So almost a week. But in the back of our heads we were thinking it could be just a cold, because Adam and I were not feeling well that week either. Yesterday on our way to the Mayo Clinic for Mason's sleep study, Dr Pauli's office had called and said that the ventricles were larger then what they were in October in the MRI, so of course I was more worried as to what would happen next. She wanted to ask me some questions and then take my answers and discuss it with Dr Pauli and she would call me back. Greeaaattt!!  Adam stayed with Mason during the sleep study, met with the Neurologist this morning to go over the results, it wasnt perfect (worse then the previous sleep study) but we didnt have to bring home a cpap or anything, just have to watch for things while he is sleeping and we will see him in a few months. He did take a look at the CT scan that was done and said that the ventricles were enlarged, but its not something we should do surgery right away for. Again just have to watch for things just incase he does develop hydrocephalus. Which I am praying that never happens. With losing my first baby at the age of 8 months I am real nervous about every little thing. Here are some pictures of Mason during the sleep study, they arent the perfect pictures, but thought I would post them anyways. Such a painful process to have him scream while they are attaching the wires.

9 month check-up

Today was Mason's 9 month check up with the peditrician. Thank goodness, because Mason was and still isnt feeling very well. Wont eat, vomiting. Right now he has been sleeping for around an hour and a half, been the longest he has slept all day. He now weighs 14lbs 4 oz, 23 1/2" long. Not sure what percentile he is on the achondroplasia growth chart with this stuff, but his head is measuring 95th percentile. So our peditrician wants to schedule a CT scan to make sure he is not developing hydrocephalus. I really hope that his head is large and not developing it. Its not really what I wanted to hear today or any other day. UGH! Hope tomorrow is a better day.

Although he is doing better with his head control, he started lifting his head on January 3rd. He has PT Tuesdays and Thursdays and I believe it is helping him reach his milestones. I just hope that they are listening to Dr Pauli with what they can and cant do. I do believe the girl who comes to our house on Tuesdays is, but not sure about the facility we take him to on Thursdays is. We are scheduled to go and see Dr Pauli in March.

We have a sleep study scheduled for next tuesday, hope nothing has changed on that. All these tests make me a nervous nelly.

Christmas 2011

Just a few days in the New Year and I am ready for it to be summer already. Christmas tree has been down since Christmas night, Masons toys are all set up with batteries and the leftovers are gone. Barely any snow on the ground, sometimes its hard to remember its Winter until you go outside and get hit by the cold. As much as I hate snow, I sure would have loved a white Christmas instead of a brown one. Oh well, there is always next year. Everyone made it to my parents house (except my sister and her family) without being sick. It was a very nice Christmas, too much food and alot of excitement coming from my niece and nephew while opening their gifts. It was Mason's 1st Christmas, he sure made out this year. I am sure next year will be worse. We are going to have to find a bigger place before then, his toys are already pushing us out. Here are a few pictures of our Christmas...I know they have been posted on fb, but I will post them on here too.

Our 1st Christmas as 3

Daddy helping Mason open gifts

I think he might think it is a little early in the am for this.



My first blog EVER! So this is just a little bit about my family.....

My husband Adam and I met at a LPA convention in Milwaukee in 2006. I lived in Minnesota and Adam was living in New Jersey. When the convention was over, I seriously didnt think things would work out between us. I thought long distance relationships usually dont work. But when he sent me roses to my house a week after I got home, I thought oh yes this will work. Why wouldnt it? I was 27, he was 32 we were old enough to know what we wanted, to make this work. So I traveled to New Jersey over Labor Day weekend and I realized how much I was really in love him. Being that he had a good paying job, I decided that it would be much easier for me to leave my family and all I knew to be with him in New Jersey. It would be alot easier for me to find a job in New Jersey then for him to find a job in his profession in Minnesota. So I moved to New Jersey in November of 2006. People probably thought it was way to fast to move to the other side of the United States, but I was at the age where I knew this was it, this was the love of my life. So I had to do what I felt was right. Adam proposed to me in January 2007, bought a house out there in May 2007 and started our life. May 2008 we got married in Minnesota because I come from a large family and he didnt have much family in New Jersey, his dad lived in Minnesota (which I thought was weird), so we just thought it would be easier and cheaper to do it in Minnesota. I got pregnant right away which is what I wanted. We had our first baby in March of 2009. When I was pregnant with Brody our ultrasound showed that he was going to be a little person, then later on the ultrasound showed he had shorter limbs then a baby with achondroplasia had and a smaller size trunk. So Adam and I had blood tests done, that showed Adam was Hypochondroplasia (we were very suprised with this outcome, I never heard of hypochondroplasia and I always thought Adam was achondroplasia) and I had achondroplasia (which I already knew, because I have a sister that also has achondroplasia. So I had a Amniocentesis done and found out our baby had both genes. The genetics at the hospital told me on the phone, well not really sure the outcome of the baby, he could die, he could mentally challenged, but I am not really sure. I thought to myself why would you tell me this if you didnt know for sure. So we met with someone that actually knew what they were talking about. She had told us that we were going to have a tough year but everything would be ok. Months later I had found another genetics doctor that was close to us that worked with dwarfism. So I contacted him (Dr Bober) and he told me what to look for when Brody was born, if he wasnt improving or doing good that we should have him transferred to AI Dupont Childrens Hospital of Delaware. We had Brody March 9, 2009. He came out screaming which the doctors were very suprised. He was at Cooper University Hospital for 2 weeks, he was off and on oxygen, was eating and wasnt. We then had him transferred to AI. He was there off and on for 8 months. When he wasnt improving we decided to do a trach and then decided with him having a trach it would be beneficial to move back to Minnesota as we would need the support and help. He was transferred to Mayo Clinic in Minnesota on November 1, 2009. He was declining fast once we got there, he survived 14 hours after being in Minnesota. It was the worst day of my life. Adam was in New Jersey and wasnt planning on coming for a couple of weeks, I was there at the hospital ALL alone and had to see my son decline so fast by myself. I didnt know what to do. My parents came down to be there with me (an hour and a half drive), after about an hour after they got there, he passed from a cardiac arrest.

This is Brody a couple of days before he passed away

Eight months later we decided to try for another baby. When we found out I was pregnant we had set up an appointment to have a CVS test done to make sure the baby didnt have both genes. At 12 weeks I had the CVS test done, a couple of days after the CVS was done, we found out we were having another boy. I knew that having another boy, he wasnt going to have both genes. We found out the results of the test I believe it was close to 4 weeks (longest 2-4 weeks of my life) later that he only had the Achondroplasia gene. I was so happy, words couldnt describe how happy, excited I was to finally have a healthy baby. Mason was born April 4, 2011.

Mason moments after birth

Mason within an hour of being home