Surgery or no Surgery?

      Mason had a sleep study done 2 months ago showing he had a severe case of Sleep Apnea. Sleep apnea is when the baby stops breathing. In Masons case he would stop breathing longer then 10 seconds and have more then 100 sleep apneas in one night. 

                                                There are 2 types of sleep apnea

                                        *Obstructive sleep apnea which is obstruction of the upper airways, which tend to be smaller in children with Down syndrome by enlarged tonsils or adenoids. The cause of the obstruction is usually treated through surgery and this tends to be very successful. 

                                        *Central sleep apnea is a much more rare condition and is caused by neurological disorders of breathing control. The cause of the problem in these cases is much harder to treat the symptoms may be alleviated if the child wears an oxygen mask at night.

      The doctor looked at Masons tonsils and adenoids to see if they were large and causing Mason to stop breathing but he didn't think so. He wanted to cover all his tracks so today we had an appointment with an ENT doctor (Ear, Nose and throat) He reviewed Masons sleep study results, looked down Masons throat and said to me "Well I don't see a problem here. As I looked over his sleep study he only had a couple of obstructive Apneas, as I look at his tonsils and adenoids they aren't big enough to cause a problem."

       I thought this was what I wanted to hear because Mason wouldn't have to have surgery but the more I thought of it I wasn't in love with what he had to say. I mentioned to him I thought it was common for babies who have down syndrome to have obstructive sleep apnea. He told me 30-60% of kids who have down syndrome have obstructive sleep apnea, and the problem can be resolved with removal of tonsils and adenoids. 

      I told the doctor I was in hopes he would tell me Mason needed surgery, he would get his adenoids and tonsils removed then no longer have sleep apnea or need oxygen. He told me he understood but with Central sleep apnea it wasn't that easy. Basically his brain forgets to tell his body to breathe. The only hope was the possibility of growing out of it. 

      I left the clinic a little upset and disappointed. Only because the oxygen is the only way to keep Mason from having lot of apnea, there's no telling when and IF he will grow out of it. When I first learned about Mason having sleep apnea I realized I better educate myself about it.  Approx. 38,000 deaths occur a year in babies from sleep apnea.  With the oxygen level dropping it can cause seizures, high blood pressure, heart attacks, death and more. 

      Whats next? I plan to make an appointment with Masons doctor to discuss what the ENT said. He will probably have to stay on oxygen and we pray he out grows this. I don't fear of him having sleep apnea I know oxygen is treating it at the moment I fear what could happen. I find myself checking Mason alot through the night to make sure the oxygen tubes don't come off, which they do often even when taped to his face. Although I will go to bed a little sad I will hold my head up, continue to pray. My researching shows it is common for babies to out grow this at a year old. Well, Mason has 2 weeks! :p 

Cha Ching

      Mike was in the military after high school got released on medical discharge because of his knee. He thought about getting back in the military we had several discussions about it. One day I got a message on Facebook from a child hood friend who I haven't spoke to in years asking if my maiden name was Shade. (which it was) through the conversation we realized we lived in the same town and decided to meet up. Low and behold her husband was an army recruiter.The conversation about Mike Reenlisting had come up. Mike had to see several doctors to get the approval that his knee was okay to reenlist. We didn't even know if it would be possible for him to get back in the military but we decided to go forward with it.   

      Mike was approved to join back in the military. 1 month after he completed bootcamp, AIT, and we moved to Alaska we were PREGNANT with our little Mason. After having Mason, finding out about him being born with Downsyndrome and all his extra medical expenses we realized the lord works in mysterious ways. Here we were a military family, with Tricare, more then 100,000 Dollars in medical bills the first month of Masons life and we paid nothing! Everything does indeed happen for a reason. 

      The military has moved us to be close to all the medical needs Mason will need. If we would of stayed in South Dakota where we were before military and we had Mason we would be in debt and have to settle with whatever medical care was in the area. With the military we get top notch medical care, and don't owe anything.

      When Mason was first put on oxygen I had to sign a paper and on this paper had the expenses. ONE oxygen tank cost about 525 dollars. At this very moment I have 10 oxygen tanks in my house and that's not including the oxygen concentration that is in Masons room, the bags to put the oxygen in or the tubes we change once a month. Mike and I talk about how the military has become an undercover blessing for Mason and our family. Every week in the mail I get a tricare bill and at the bottom says... you owe 0.00 and every week we know we are very blessed!! 

      

"Where does all the dark hair come from?"

 We get asked ALL the time "Where does your little on get his dark hair?" Basically because Mike has a dirty blonde, Im blonde (bleached out) and his brother is a red head. Today we were asked if Mason was adopted, my husband kind of snipped at her, pretty sure he didn't mean to but that's not a frequent asked question. After we were alone I told him maybe just maybe we were asked because of his dark hair? So I thought for fun I would post some pictures of Masons family. The first picture is me with my naturally brown hair, the next is Masons grandpa and aunt Jo (from Mikes side of the family.) Below that is Mikes brother Mark then the last 2 pictures are of Mason and my aunt.

"Its okay big brothers here"

      My husband and I had this opportunity to go to a couples retreat, he mentioned it and I blew it off immediately BC of child care and being away from our kids all weekend. Wasn't going to happen. We went to an FRG meeting (for the army) and the couples retreat was mentioned again. "Its at a beautiful resort, couples activities, interactive class, free child care, all weekend paid it will be a fun weekend." Said the army Chaplin.
       The first thing I wanted to know was about the child care. Would the kids be at the resort with us? Would they stay with us? Who is watching them? Would they take a child who is enrolled in EFMP? As we were getting the answers we found the kids would be on the floor right below while we were in class.They did accept EFMP they were certified, and registered at CYS. And the kids would stay in the resort with us. I was game! It was my husband and I 5 year wedding anniversary and mothers day. What could be better? The resort was beautiful!
     I knew Dylan would be fine. I was worried about Mason, he has gotten to the age of separation anxiety and  didn't like strangers. We signed the kids in, then both Mike and I brought Mason and Dylan in the room. Dylan ran off because he saw toys he had yet to get his hands on. We laid Mason in a playpen because I figured that would be better then handing him off to a complete stranger then walking out of the room. We talked to him told him we were going to a class, and we would be back soon. He was fine. I talked to one of the ladies, told her Mason HAS to be on oxygen if he falls asleep, I explained how much he needed and how it worked. I also told her if he got to upset to call me or if she had ANY questions call me!
      This was the longest Mason was away from me and with complete strangers. I was nervous to say the least. I checked my phone a million times within the first class (which was 5 hours long) but nothing, no call, no text. When we went to pick him up he was being held and content. The lady told me she has not put him down since I brought him. I felt bad but expected it at the same time. She said when she first picked him up he started fussing and screamed for almost 15 minutes,she finally got him calmed down or she was about to call me. After he calmed down she couldn't put him down.
      We spent the rest of the day eating delicious food, and swimming with the kids. The next day didn't go much easier they had the same problem. During a 10 minute break I went and checked on him. The lady asked "I don't mind holding him but how do I put him down?" I brought his favorite toy, got down on my hands and knees played with him a few minutes to ease him into being on the floor, then headed for the door. When I picked him up she said "He did great!!! He played well."
     On the first day of childcare we told Dylan that Mason might get scared because hes never away from mommy and daddy. We also told him that if Mason is crying to maybe just go to him and let him see your face so hes not too scared.  The third day I went to pick the boys up and Dylan had Mason in his lap playing with him. Which wasn't unusual Dylan loves to play, hold, touch his brother. The lady said She almost called me again but Dylan heard him crying then came over and said "heyyy Mason its okay big brothers here" then they heard Mason giggling. She continued to tell me how sweet Dylan was to his brother because Dylan would check on Mason every time he would cry, through the whole weekend.
      I had my doubts, worries, and concerns for child care but we made it through. I'm a mom what can I say?

Its not about when...

      When Dylan was a baby I would keep up on the developmental stages. When he should crawl, walk, talk and ect. Not to compete with other babies but so I know what to work on and where he was. He had a lady once a month with a program called parents as teachers come to our house to teach us new activities for growth and his age. This program was offered to any child. He was always ahead of the game with everything he did basically because he became our life. Sitting across the living room cheering him on to come to mommy, reading books, or stacking yogurt cups became our entertainment.
      I knew with Mason his stages would come later, he would be delayed. At the doctors office for his monthly checkups the doctor gives me charts of things a baby his age should be doing, but not a chart of a baby with delays and what they should be doing. I couldn't wrap my head around what was "Reality" and what to expect for his age as a baby with down syndrome. I asked his therapist if she had a chart or something to go off of with kids like Mason. The following week she brought me a bunch of papers. As I was looking at the papers there was no age of when a baby should do something but it was "What was next" She suggested I go by these papers instead of focusing on his age and what he should be doing. because it could be frustrating.
      Although she was meant well I took it upon myself to look up a chart online. I dont know why it was a big deal and I don't necessarily go off of it but I wanted to know I guess. So here it is. :)

GROSS MOTOR SKILLS
ACTIVITY	Children with Down syndrome
	Average age	Range	Masons accomplishments
Balances head and holds it steady when swayed	5m	3m to 8.5m	about 5 months
Rolls from side to back	5m	3m to 9m	2 months
Rolls from stomach to back	6m	5m to 12m	3 months
Supports body on arms, lifts head and chest when lying on stomach	6m	3m to 10m	3 months
Reaches one arm forward when lying on stomach	6m	5m to 10m	5 months
Sits with support	7m	5m to 9m	6 and half months
Hand to foot play	7m	4m to 10m	from the time he was born?
Rolls from back to stomach	7m	5m to 9m	3 months
Rolls over	8m	4m to 12m	3 months
Moves around his/her own axis while sitting on floor	8m	5m to 13m	not yet
Sits while supported by own arms	8m	5m to 15m	6 and half months
Sits in high chair	9m	6m to 15m	7 months
Sits without support for one minute or more	9m	6m to 16m	not there yet...
Crawls	14m	9m to 19m	does the worm and bear crawl 11 months
Sits steadily for 10 minutes or more and is well balanced	11m	8.5m to 15.5m
Changes from sitting to standing position	13m	8m to 17m
Crawls with stomach lifted from the floor	14m	10m to 20m
Pulls to stand using furniture	15m	8m to 26m
Walks with support	16m	6m to 30m
Stands alone	18m	12m to 38m
Climbs up a flight of stairs	20m	12m to 28m
Walks 10 feet with a push toy	22m	16m to 30m
Walks alone	23m	13m to 48m
Walks up stairs with help	30m	20m to 48m
Walks downstairs with help	36m	24m to 60m+
Runs	around 4 years
Walks up stairs holding the rail alternating feet	56m	(40m to 66m)
Jumps on the spot	4 to 5 years
Rides a tricycle 15 feet	61m	(50m to 72m)
Walks down stairs holding the rail alternating feet	81m (21m)	(60m to 96m)