Monday, July 29, 2013
First Endrocrinology appointment
Well today was Jackson's first endro appointment. He weighed in at 9lbs 14 oz :) which is good for him but he still falls in the 0 percentile for kids his age. This appointment was pretty much just to get some medical background and some history about the family. They also decided to run more blood work and he took it like a champ. He let out a little fuss when the needle went in but not a peep while she threaded the needle to find his vein and the couple of minutes it took to get as much blood as they needed he just laid there and talked to them :) He is such a strong and brave little man. His doctor also requested that he has an x-ray of his left hand to find the bone age.
I love his endro doctor. He made me feel very comfortable and did not get at all annoyed with my scatter brain or the very bored 3 year old :) He also acknowledged how hard it must be on me to take of all Jackson's appointments and both boys (sometimes all 3) on my own all week and that he hopes my boyfriend realizes how hard it is. Not sure if he noticed the huge bags under my eyes today or what :) Don't get me wrong I wouldn't trade places with anyone in the world but it is nice to get that kind of acknowledgement from someone and have them realize how truly difficult some days really are. I am very grateful that I have a boyfriend that works hard so that I can stay home with my children and you always hear that from other people but very rarely do you hear them say how hard your "job" is. I love being a mom but there are some days where I wish I could just stay in bed all day never mind sleep more then 3 hours straight on a regular basis. With a job you work 8 hours with a 15 minute break and an hour lunch but as a stay at home mother/father there is no such thing as a break. You can't just call in when you are sick or sleep through an alarm clock or decided not to go to work because you just don't feel like going. You give up everything you need, want or desire so that your child has everything it could possibly need even if that means you go without. The saying is true, the job of a mother is never done and it is nice to feel like what you do is appreciated even if it is by your son's doctor.
This past week I also made the hard decision to stop pumping :( He never seems full and ends up needing formula anyway and then he would be hungry an hour and a half to 2 hours later. Also with all the stress of everything my milk supply had decreased big time and he his appetite had grown to more then I could produce. I know it sounds like I am trying to convince everyone that it was a good idea for me to stop but actually I think I am still trying to convince myself :( I feel guilty that I am no longer pumping. It was so much easier with Grayson because he would latch on but with Jackson it takes him 30 mins to an hour to eat and me 15 mins to pump so if felt like I was always pumping or feeding him and he seems so much more satisfied with the formula. Plus with being on the road all the time with his appointments it seemed like I was never able to pump while he was eating.
To top everything off Grayson will be starting pre-school this fall. :( Since the day he was born I dreaded the beginning of school :( It means that my baby is no longer a baby. He is so excited and talks about it non stop and absolutely loves his teacher. He needs this. I feel so bad for him being at home all week with boring, tired, old mommy and little brother that can't do anything. He is such a smart boy and he is going to do so well.
Bryce is doing a transitional program with school to help with the transfer from kindergarten to first grade. After not being very happy about it he is actually enjoying it. He said they take hikes on nature trails and learn about trees and he got to pick blueberries :)
I am a lucky mom to have such amazing little boys in my life.
I love his endro doctor. He made me feel very comfortable and did not get at all annoyed with my scatter brain or the very bored 3 year old :) He also acknowledged how hard it must be on me to take of all Jackson's appointments and both boys (sometimes all 3) on my own all week and that he hopes my boyfriend realizes how hard it is. Not sure if he noticed the huge bags under my eyes today or what :) Don't get me wrong I wouldn't trade places with anyone in the world but it is nice to get that kind of acknowledgement from someone and have them realize how truly difficult some days really are. I am very grateful that I have a boyfriend that works hard so that I can stay home with my children and you always hear that from other people but very rarely do you hear them say how hard your "job" is. I love being a mom but there are some days where I wish I could just stay in bed all day never mind sleep more then 3 hours straight on a regular basis. With a job you work 8 hours with a 15 minute break and an hour lunch but as a stay at home mother/father there is no such thing as a break. You can't just call in when you are sick or sleep through an alarm clock or decided not to go to work because you just don't feel like going. You give up everything you need, want or desire so that your child has everything it could possibly need even if that means you go without. The saying is true, the job of a mother is never done and it is nice to feel like what you do is appreciated even if it is by your son's doctor.
This past week I also made the hard decision to stop pumping :( He never seems full and ends up needing formula anyway and then he would be hungry an hour and a half to 2 hours later. Also with all the stress of everything my milk supply had decreased big time and he his appetite had grown to more then I could produce. I know it sounds like I am trying to convince everyone that it was a good idea for me to stop but actually I think I am still trying to convince myself :( I feel guilty that I am no longer pumping. It was so much easier with Grayson because he would latch on but with Jackson it takes him 30 mins to an hour to eat and me 15 mins to pump so if felt like I was always pumping or feeding him and he seems so much more satisfied with the formula. Plus with being on the road all the time with his appointments it seemed like I was never able to pump while he was eating.
To top everything off Grayson will be starting pre-school this fall. :( Since the day he was born I dreaded the beginning of school :( It means that my baby is no longer a baby. He is so excited and talks about it non stop and absolutely loves his teacher. He needs this. I feel so bad for him being at home all week with boring, tired, old mommy and little brother that can't do anything. He is such a smart boy and he is going to do so well.
Bryce is doing a transitional program with school to help with the transfer from kindergarten to first grade. After not being very happy about it he is actually enjoying it. He said they take hikes on nature trails and learn about trees and he got to pick blueberries :)
I am a lucky mom to have such amazing little boys in my life.
Friday, July 19, 2013
3 month Check up
Yesterday Jackson had his 3 month check up :) He is 9lbs 6oz and 20 inches long. He is still a little peanut but he is growing pretty steady. He is finally going from newborn clothes to 0-3 months :) He is getting so vocal. I love to see how much progress he is making in such a short amount of time. On the 29th we will be having our first visit with the endocrinologist were they will begin to monitor his growth.
Wednesday, July 17, 2013
3 months
My little man is 3 months :(
I wanted to make this update yesterday but we were very busy with two appointments one that lasted 3 hours :( Well we started the morning with physical therapy. Jackson has some tight muscles in the left side of his next which is causing him to tip his head to the side. We also learned that he has low muscle tone in his limbs and that is why he doesn't put weight on his legs. It is not that he can't it is just that it is harder to do so he only does it when he gets mad. She gave us some stretches we have to do and she will be back every week to work with him.
Then after that we headed off on our hour ride to Portland with a very upset little man since he couldn't eat for 4 hours so that he would sleep during his hearing test. After a bottle, burping, snooping and some fighting and 1.5 hours later he finally fell asleep. He did an awesome job. He passed with flying colors on his right ear but he still is showing some hearing loss in his left ear. She said that the movement on the left ear drum isn't what they would like to see at his age so they think he many just have a blockage. We have to go back in October and do some more tests to see if it is a blockage or if it has to do with the nerve.
Tomorrow we will have his 3 month appointment. With all these doctors appointment and other summer obligations it has been so difficult to keep up with pumping and he is now eating way more then I can pump :( It make me sad that I am not able to supply all he can eat and that we have had to start supplementing with formula. It is just so much harder then just breast feeding. Especially with a little 3 year old running around. It seems like every time I start pumping some one needs something and all of you moms out there know that if you are not relaxed it make pumping so much harder. As of right now I am still pumping when I can and he is getting about half formula and half breast milk at each feeding.
While we were at that long appointment my mother took Grayson to see his first movie in a movie theater. He loved it except for the face dive into the door. He is such a clumsy little man. After falling off the slide this weekend, falling into a door and then falling into a chair when we were out to eat yesterday I am hoping that he takes a little bit of a break from accidents. His poor little head can't take much more ;)
Today I am going to try and do Jackson's 3 month photo shoot :)
I wanted to make this update yesterday but we were very busy with two appointments one that lasted 3 hours :( Well we started the morning with physical therapy. Jackson has some tight muscles in the left side of his next which is causing him to tip his head to the side. We also learned that he has low muscle tone in his limbs and that is why he doesn't put weight on his legs. It is not that he can't it is just that it is harder to do so he only does it when he gets mad. She gave us some stretches we have to do and she will be back every week to work with him.
Then after that we headed off on our hour ride to Portland with a very upset little man since he couldn't eat for 4 hours so that he would sleep during his hearing test. After a bottle, burping, snooping and some fighting and 1.5 hours later he finally fell asleep. He did an awesome job. He passed with flying colors on his right ear but he still is showing some hearing loss in his left ear. She said that the movement on the left ear drum isn't what they would like to see at his age so they think he many just have a blockage. We have to go back in October and do some more tests to see if it is a blockage or if it has to do with the nerve.
Tomorrow we will have his 3 month appointment. With all these doctors appointment and other summer obligations it has been so difficult to keep up with pumping and he is now eating way more then I can pump :( It make me sad that I am not able to supply all he can eat and that we have had to start supplementing with formula. It is just so much harder then just breast feeding. Especially with a little 3 year old running around. It seems like every time I start pumping some one needs something and all of you moms out there know that if you are not relaxed it make pumping so much harder. As of right now I am still pumping when I can and he is getting about half formula and half breast milk at each feeding.
While we were at that long appointment my mother took Grayson to see his first movie in a movie theater. He loved it except for the face dive into the door. He is such a clumsy little man. After falling off the slide this weekend, falling into a door and then falling into a chair when we were out to eat yesterday I am hoping that he takes a little bit of a break from accidents. His poor little head can't take much more ;)
Today I am going to try and do Jackson's 3 month photo shoot :)
Sunday, July 7, 2013
Questions
So after a lot of thinking I decided that I would try and do some research about Jackson's condition. Mostly because of not knowing what to expect is kind of scary and wondering if the choice to not label him is actually hurting us. I got a letter in the mail stating that Maine Care will not cover the supplies for the equipment that the hospital had said we needed in order to bring him home. My question is why would they cover the cost of the rental of the equipment but no the supplies that are needed to use the equipment. First of all I am mad because I didn't want the stuff in the first place. I knew he didn't need it and I was right. We never used any of it. The hospital pretty much told us that if we went against what they said it would be consider child endangerment and going against medical advise. So we went along with their advice and now our insurance is saying based on the information that was provided by our provider they have denied our request. So I am just wondering if my stubbornness to not label my child is going to hurt him in they way he is provided for medically.
I decided that I would try and prepare myself for what the future may hold but I was very disappointed. There is not a lot of information out this since this genetic condition is very rare. He has the 15 q 26.2 deletion. I find a lot of varying information but most of it is for other 15 q deletions. So I guess we are going to just learn from him as he grows. He has already amazed us in some many different ways and I am sure he will continue to as he grows. A good friend of mine recommended that I read an article that was posted on CNN about a father and his daughter titled "I almost left my disabled daughter" It was a great article and it really makes you think. Life is rough but no matter what your child didn't ask to be different and all they want is for you to love them no matter what. They are the most amazing gift you will ever have in life. Thank you Duane it really helped me put my life in perspective.
On a happier note our camping experience this weekend was awesome. All 3 boys enjoyed the tenting experience minus the bug bites. It was also great to spend some time with some great family and to witness an engagement of two awesome people.
I decided that I would try and prepare myself for what the future may hold but I was very disappointed. There is not a lot of information out this since this genetic condition is very rare. He has the 15 q 26.2 deletion. I find a lot of varying information but most of it is for other 15 q deletions. So I guess we are going to just learn from him as he grows. He has already amazed us in some many different ways and I am sure he will continue to as he grows. A good friend of mine recommended that I read an article that was posted on CNN about a father and his daughter titled "I almost left my disabled daughter" It was a great article and it really makes you think. Life is rough but no matter what your child didn't ask to be different and all they want is for you to love them no matter what. They are the most amazing gift you will ever have in life. Thank you Duane it really helped me put my life in perspective.
On a happier note our camping experience this weekend was awesome. All 3 boys enjoyed the tenting experience minus the bug bites. It was also great to spend some time with some great family and to witness an engagement of two awesome people.
Tuesday, July 2, 2013
Update
Wow I didn't realize how long it had been since I have updated this blog. I guess not to much has happened since the last time I wrote. I have been super busy helping my best friend get ready for her wedding. It ended up being a beautiful day. Grayson and Bryce were the ring bearers and they did awesome.
Jackson gave me a little bit of a scare last thursday. I came home from helping my bestfriend decorate for her wedding and Corey told me that Jackson had some bloody in his stools :( So Friday we ended up at the doctors having blood drawn and an xray of his belly. Good news is the test came back all normal but he may have a dairy allergy. It is now just a waiting game. If it happens again we will have to go completely dairy free.
This month is going to be super busy with his 3 month appointment, 3 hour hearing test and his endroconology appointment. During his 3 month appointment we will talk about him being evaluated by a developemental specialist to see if he will need some physical theraphy. His doctor said as of now she isn't sure if he will need it because his trunk strength seems great.
On a happy note all his equipment got picked up today :) and we are packing for Grayson, Jackson and Bryce's real first camping trip :) Bryce has camped in the yard but this Thursday we are headed to Vermont to do some ral camping :) and spending time with losts of family. I am hoping that Grayson does ok. Last time we were at camp he cried every night that he wanted to go home. He is such a home body. This time we will be in tents some hopefully he will think it is more fun. We are stocked up on glow sticks :)
Jackson got to meet Uncle Tony, Auntie Veronica and Maddox, Zoey and Emma this past Sunday and we get to spend some more time with them at camp.
Jackson gave me a little bit of a scare last thursday. I came home from helping my bestfriend decorate for her wedding and Corey told me that Jackson had some bloody in his stools :( So Friday we ended up at the doctors having blood drawn and an xray of his belly. Good news is the test came back all normal but he may have a dairy allergy. It is now just a waiting game. If it happens again we will have to go completely dairy free.
This month is going to be super busy with his 3 month appointment, 3 hour hearing test and his endroconology appointment. During his 3 month appointment we will talk about him being evaluated by a developemental specialist to see if he will need some physical theraphy. His doctor said as of now she isn't sure if he will need it because his trunk strength seems great.
On a happy note all his equipment got picked up today :) and we are packing for Grayson, Jackson and Bryce's real first camping trip :) Bryce has camped in the yard but this Thursday we are headed to Vermont to do some ral camping :) and spending time with losts of family. I am hoping that Grayson does ok. Last time we were at camp he cried every night that he wanted to go home. He is such a home body. This time we will be in tents some hopefully he will think it is more fun. We are stocked up on glow sticks :)
Jackson got to meet Uncle Tony, Auntie Veronica and Maddox, Zoey and Emma this past Sunday and we get to spend some more time with them at camp.
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