A lot of work= progress baby

                                                                               

        "Every child is gifted.  They just unwrap their packages at different times."

Masons physical therapist comes to our house once a week and she always says "Mason you look like you got so much bigger. You have changed so much!"  I know exactly what she means.

When Dylan was a year and half Mike and I flew to Las Vegas and got married. Leaving Dylan with my aunt. I remember coming home from Vegas seeing Dylan and it seemed like he grew taller, gained weight, could talk more and he changed completely in a week.  

Every week Masons therapist comes and says "OHHH Mason that looks great your doing that better this week." I always seem to be amazed by her excitement Probably because I work with him everyday and dont see a HUGE change. Her encouraging positive words keep me motivated to continue to push Mason.

The other night Mike says "STACY, Mason just pivoted around" He works all day comes home in the evenings so he doesnt know what I have been working on with Mason or what Mason is working on in therapy so for him to point out his progress with excitement is also motivating. 

What kids at the age of 4-5 months can do takes Hours, tears and determination to get Mason to accomplish when he is twice the age. 

Therapy teaches me new things to work on throughout the week to focus on certain areas. Mason has determination and wants to do things but he gets tired very easily because of his low muscle tone. Right now we are working on strength. techniques to build his muscles and he also gets a body massage (from me) at every diaper change so I can help strengthen his muscles.  

Feeding time can take up to 2 hours per meal working with hand eye coordination, grasping, and hand to mouth techniques, trying different foods, hand on hand sign language, introducing Mason to holding his own spoon, cup ect. 

After his feedings he sleep about 2 hours. It takes alot out of him because of his hyptonia (low muscle tone) After physical therapy, with the therapist or just me pushing him Mason will sleep about 3-4 hours afterwards. 

All the pushing and time I put into Mason is starting to pay off. 6 weeks ago when we did an evaluation to see where Mason was he wasn't even holding a rattle or toy on his own. Now he grabs everything in site. Had no interest in food or holding his bottle now he is eating mostly table food and able to hold his own sippy. When I get compliments and reassurance weekly from his therapist I know that in 5 more months when another evaluation is done he is going to knock it out of the park and impress his team! Cant WAIT! :) 

Fun Factor:

The difficulties experienced by children with a diagnosis of low muscle tone

May be late learning to sit and walk - but not always Have trouble sitting erect and working at a table - tend to sit with back rounded, may lean on one hand when drawing and writing Have difficulty sitting still, tend to fidget, not complete school tasks May tire very quickly, not like walking far, have trouble going up stairs May be good at games that involve short bursts of running,  but have difficulty with posture in sitting, drawing and handwriting - these tasks require sustained activity in the postural muscles Sit between legs on floor (w-sitting), do not like cross legged sitting Appear to have poor attention span or concentration, give up easily Cannot hang on the monkey bars, do not like climbing on the jungle gym, are fearful

A brother is a friend God gave you...

 My little eyes
are watching
All you say and do
And when I grow up
big and tall
I want to be like you.

My little ears
are listening
To everything you say
I am learning how
to grow up
To be like you
someday.

So be careful how
you teach me
To be the person
that you are.
You’re a knight in
shining armor
You’re my brightest
shining star.

When Dylan found out he was going to be a big brother he was so happy. He prayed every single night before I was pregnant that he could be a big brother. He didnt care if he was given a sister or a brother.
Through the pregnancy Mike and I would tell Dylan how special and important it is to be a big brother. How his little brother was going to grow up and want to be just like him.
Dylan being the only child for 5 years we made sure the day Mason was born was very special. Dylan got a big brother basket which had his favorite candy, some toys, a couple big brother books, and a big brother shirt.
Dylan was at a friends while I had Mason and after Mason was born we introduced Dylan and Mason. We congratulated Dylan on being a big brother. He was in love!!! Dylan put on his big brother shirt and wanted to hold Mason right away.

^ the picture above is Dylan holding his baby brother for the first time. He was all smiles and kept saying "awww...awwww...awwww"

Dylan found out his brother had to go on an airplane and be taken to another hospital because he was sick. Dylan was in tears. Very upset. He wanted to say "See you" and tell Mason he loves him.

Dylan and daddy bought a teddy bear for Mason. In this picture Dylan put the teddy in Masons bed. (you can kinda see him in the left corner) When they took off with Mason you would of thought someone took Dylans favorite toy away. He was crushed. Cried and Cried.

Mike and I told Dylan...mommy and Mason was going on this airplane. And Dylan and daddy were going on another airplane and was going to see us soon.

Where ever Mason went big brother went. He even asked for a chair so he could watch. 

Dylan "mom put Mason by me so I can show him sonic and Mario..."

Dylan "Mom I want to show Mason my cars can you put him on the floor?" 

 Dylan talks to Mason shows him his toys, reads to him, cuddles with him, Dylan loves to help out with Mason too.
As Mason gets older we can see his love for his brother. Dylan will get close to Mason and talk to him, Mason will smile and reach for Dylan. Wanting Dylan to hold him. Mason will talk to Dylan and squeal, always excited when his brother is around.

     

Looking back...

Staying at the hospital the other night when Mason was getting his sleep study done reminded me of when I was in the hospital very very very sick just 3 weeks after Mason was born. After I delivered Mason there was so many emotions. Finding out that Mason indeed could have downs, and your usual ups and downs after giving birth.  The excitement, the exhaustion, the fears, the instant worries,over joyed, amazed and being overwhelmed.

After giving birth I had a friend come and visit me. I was still in alot of pain. My friend was holding Mason and ooo n and awww n over his preciousness when I started crying, screaming for the nurse. I pushed the nurse button and the nurse came in I told her I needed my doctor right away I was in ALOT of pain I felt like I was about to give birth again. And this was AFTER the after birth was taken care of. The nurse was taking too long so I pushed the nurse button once again. The nurse came back in at this point I was having contractions, breathing heavy and crying hysterically. The nurse ran out of the room to get my doctor. Still taking waaaay to long. I yelled at my friend (sorry about that by the way. lol) to go get my doctor. While all of this was going on Mike was SOUND asleep in the corner of the room on a chair. My friend ran and got the doctor. The doctor FINALLY came in and said "Do you feel like your going into labor again?" 

I just screamed. She said I had some blood clots I needed to give birth to. So i was indeed having contractions. My friend took Dylan out of the room, Mike woke up came over to hold my hand he had NO idea what was going on. The doctor reached her hand up while pushing down on my stomach with the other hand at the same time. It hurt SO bad I would of rather gave birth 10 more times. It hurt THAT bad. After some pushing and her pushing my stomach down and grabbing she pulled out a HUGE blood clot that took both hands to carry it. I was STILL feeling like I needed to give birth so she said "I don't think this was the only one." She reached BACK in grabbing yet another huge one. I was squeezing Mikes hand so hard and after he saw the blood clots he was feeling a little sick I thought he was going to pass out. After pulling out 4 huge blood clots she was done.

It took me a while to calm down after I realized the only reason I had those blood clots was because the nurse wasn't doing her job coming in and pushing on my stomach to get that access blood out every 15-30 minutes. I was in ALOT of pain and outraged. 

Later that night I had gotten a fever which resulted in me staying an extra day at the hospital. Through this extra stay Mason was whisked away to a hospital across town and Mike was going back and forth from my hospital to Masons. Dylan was staying with a friend. My doctor told me I had to be able to get out of bed (I was still in alot of pain) and be able to go to the bathroom before she could think about releasing me from the hospital. I put on my game face because my focus was being where my baby was. I walked around the hospital (bent over because I couldn't stand straight) and lied about being able to go to the bathroom. The doctor was not convinced she said she thinks it would be better for me to stay another night. I cried and said "If I refuse to stay another day?" She said there's nothing she could do. I told her (while crying) I was feeling better I needed to get to where my baby was. Mike of course was trying to convince me to stay because he knew I wasnt okay. But I am a stubborn one especially when it comes to being with my kids. I then left the hospital (looking back it was a very stupid move but at the time I had to be with Mason) 

I spent time in the NICU with Mason then went home laying in my bed still not being able to stand straight, and vomiting. The next day Mason and I was on a small jet taking off to Anchorage where he needed to be. I was set up in a mommy and me room. Through the 10 days of Mason being in the NICU I was in so much pain, an emotional mess. 

I remember going to the cafeteria to get a drink (because I wasn't eating any food through this 10 days) I sat at the table started bawling. I was alone at the time Mike was trying to get to Anchorage and my family was far away. I folded my hands and said a prayer 

"Lord please take care of my baby, give him strength, lord please continue to be with me and give me strength, please be with Mike and Dylan as they are on their flight to get here and give Mike strength as he is the one keeping things together. Im scared and I know you are with me  Im following your lead lord."  I laid my head on the table trying to take deep breaths so I could walk back through the hospital back to where Mason was. 

Mason was released from the NICU, we flew back to Fairbanks. My sister in law and Mother in law both met us in Fairbanks that evening. (one coming from California and the other from Iowa) I was definately feeling overwhelmed. At this time we knew Mason did have downs and I was feeling sicker by the day. After a couple weeks my family left. I told Mike I couldnt take the pain anymore  I was  feeling light headed, dizzy and like I was going to pass out. He took me to the ER. I stayed a couple nights at the hospital being put on medicine and IVs because they suspected me having an infection. They released me after 48 hours. 

I was told  if I got a fever I had to come back. It was just a few short hours I had a fever. Back to the ER I went. The doctor told me they needed to keep me longer to run tests to see what was going on. It was that moment I had my first panic attack. I had to be taken away from my family, my newborn baby, a 5 year old I have only been away from a hand full of times and relying on my husband to take care of my kids when I was always the one to do so. I needed to be with my family. The doctor told me it has been more then a month and If I did have an infection I could be in serious trouble. They gave me some good drugs to calm me down. I had an MRI done which determined I had a large amount of infection. I had to have an emergency surgery. After the surgery I had to have another MRI done which showed I had a kidney infection in result of my other infection causing one of the kidneys not to function. Needing ANOTHER surgery. Being put completely down again, on oxygen and away from my family I was scared, and completely numb. 

10 days, 2 surgeries, pain killer after pain killer, ALOT of Morphine, more tears then I have cried in my entire life, antidepressants, Xanax, fluids, alot of needles, 50lbs lighter and alot of prayer I was feeling better and was released from the hospital. As of today I am no longer on anti depressants or Xanax but at the time I felt I had no control of my life and needed that extra boost. 

 The lesson I learned was to take care of myself, I was deathly ill  because the infection had started to spread in my blood stream. I cant say I would of done things differently but If I was ever put in that place again I would really think things through. ha ha. 

Through the surgeries there was damage done leaving a high risk of not being able to have another baby, and at great risk of miscarriage or tubal pregnancies. 

Through my blogging I chose not to blog about this time because it was the most challenging, and emotional time of my life. Now I look back and realize how much I have went through and how strong I am to this day because of this journey. 

May angels watch him through the night, keep him safe till morning light

Sleep study time! The moment of truth!

A 35 minute drive from my house to the sleep study clinic. Seemed like the longest drive. Im normally one to crank the music and sing my heart out while I drive but my mind was full of thoughts. I turned the music off reached back and held Masons hand. He was just a talking. I told him we are going to go see a doctor and he was going to be super brave. I told him I brought his teddy (which his dad and brother bought for him when he was born and has been in his crib when he was in the NICU, on the private jet when he was being transfered from one hospital to the next, and rode in every ambulance with him to be there for him when he is scared.) I told him mommy will be there and its okay to be scared because mommy was scared to.

We continued the drive my mind was racin. I wasnt worried about the tests I was worried about the results. Sleep Apnea means Mason stops breathing for longer then 10 seconds. That was one of the things the doctor wanted to find out about.

We arrived at the clinic parking lot had a couple of cars in it. We stood by the door and had to call the front desk so the nurse could let us in (doors are locked for security) The halls were empty, and very quiet. A nurse showed us to our room. There was a queen size bed with a very tall crib next to it. Another nurse came in. He introduced himself, talked to Mason then had me watch a video and fill out papers. The video seemed like a waste of time because it wasnt talking about a sleep study for a baby it was talking about a sleep study for an adult. And they were different.

After papers were filled out, video was watched the nurse came in with a cart. On this cart was ALOT of wires, medical tape, scissors, and tubes. We started off by laying Mason on the queen bed he put 2 wires on each one of Masons legs (for restless leg syndrome) he put 2 wires on Masons chest. One on each side. I buttoned Masons jam jams up (pjs) having the the wires come out in the same spot.

The nurse said "now heres the hard part!" I gave him that "OHHH SHIT" look. He chuckled and said I have to put 15 wires on his head. He took each wire and put this gunk on it that looked like crisco then stuck it in my babies beautiful dark hair sticking it to the scalp. After he got all of them stuck on he took a wrap and started wrapping Masons head making him look like he was in a coma or something. Mason was very Patient which I was surprised because it was 2 hours past his bedtime. Once he was wrapped up he took all the wires and wrapped tape around them keeping them together.

I told the nurse "you expect him to sleep with that big thing poking out of his head" He said "yup he will eventually fall asleep."

Eventually was the key word here. I laid Mason in his crib his eyes got big and he started screaming. I picked him back up cords and all. Cuddled with him and cried like a baby. I knew he was scared, uncomfortable and extremely tired. I held him for a long time just to comfort him. Laid him down putting my hand on his tummy and talking to him. Telling him he needs to go nite nite and when he wakes up we will go home to dad and brother. He eventually fell asleep after about an hour.

There was a video camera on Mason so the nurse could watch his movements he would come in to adjust Masons oxygen and to move Mason from tummy to back, back to tummy to see how his oxygen levels were and what not.

I dont remember falling asleep but I eventually did. The nurse came in about 6 turned on the lights to wake us. I instantly bothered him with questions

"How did everything look?"

Nurse "Everything was okay, pretty steady"

Me "really??? Did you have to turn on his oxygen?"

Nurse "once he fell in that deep sleep his oxygen level went from 100 to low 80s"

Me "Wait I thought you said everything was okay"

Nurse "well what I meant by that was I didnt have to call the emergency room"

Me "Okay just lay it on me what else did you see?"

Nurse "Well its not my job to tell you the polmonologist has to take a look at the reports then faxes them to your doctor then your doctor will discuss it with you."

Me "ohhhh come ONNNN you cant tell me anything?"

Nurse "his oxygen was in the low 80s I turned on his oxygen because if his oxygen levels were to get to 79 we would of had to call the ER."

Me "okaaaay? did you see any signs of sleep apnea?"

Nurse "your going to get me in trouble"

Me " come on give me a heads up."

Nurse " I can only tell you what I saw, I cant show you the reports, or tell you whats going to happen next."

Me "lets hear it."

Nurse " I did see sleep apnea. There are 3 kinds. The ones I saw with this little guy was obstructive (normally caused by low muscle tone, or enlarged tonsils) and I saw the sleep apnea caused from the brain. Neurological. I saw more then 10 episodes in an hour"

Me " IN AN HOUR?"

Nurse "Sleep apnea in an adult is somewhat normal and in young kids is severe. I dont know what your doctor will do next probably get his tonsils looked at, and removed then be put on cpap. Will probably up his oxygen through the night."

Me "WOW!"

Nurse "any other questions?"

Me " ummm nope Im about to call my doctor at his house!"

haha. Well I was kidding I knew I had to wait a week for the results to get to him. Ha you think Im going to wait a week? ummm no I will be calling Monday morning to get things rolling as fast as they can.

I will keep everyone posted on our next step...please continue the prayers.

A little swim, A little giggle, a big moment

Life has been crazy busy for both me and my husband. We were sitting around the house a weekend after soldier boy was doing classes at work and a week full of doctor appointments, therapys and decided "Lets take off" We wanted to do something fun for the kids but basically get away. I told him we should go stay in a hotel so Mason could go swimming for the first time. It was a go right after I finished my sentence.

 Mason loves loves his bath time. He is most talkative and most active in the bath. I knew swimming was a must. Mike got in the pool cuz of course I had to take pictures and video tape. I handed him Mason. He instantly started kicking his feet when he was in his floaty boat.

All smiles. Dylan came over to Mason swimming and of course that requires splashing. He splashed Mason in the face. Mike and I looked right at Mason figured he would cry. Well we didnt know what to expect. It was then Mason GIGGLED! 9 months and giggled for the first time WITHOUT being tickled. I was a giggly crying mess. It couldnt of been better. <3 Will cherish that moment always.

Never Alone

I had one of those moments where I knew I wasn't alone. No matter the struggle, no matter the pain, things could be better but things could be a lot worst and I'm not the only one going through a difficult journey with a baby.
       I was holding Mason in the waiting room at the clinic to get his RSV shot. This lady took her tiny little baby out of his car seat and held him. She looked at me and smiled. Those awkward moments. So I thought I would strike up a conversation. I told her how adorable her little man was and asked her how old he was. She looked at him, sighed, and looked at me answering 9 months. Her baby was probably 11 lbs IF that. She said he was born at 25 weeks, he was a preemie. I said " A miracle baby for sure"  She asked how old Mason was and I told her also 9 months.(19lbs) She said "ohhh that's how big my guy should be then." I told her that Mason was born with Downs and is actually much smaller then he is supposed to be as well.
      She told me a little bit about her journey. She told me her lil guy was born at one pound and a couple ounces. He was the size of her husbands hand. She continued telling me that her baby got fluid in the brain causing his head to increase in size. He had to have surgery to get the fluid out. The pressure of the fluid caused him to be deaf. He was wearing tiny little hearing aids. And with the surgery he had to have a metal plate put in. I could see where the plate was. Regardless this baby was absolutely adorable. He didn't have much of a baby face I told her he had such a little man face. He lifted his eye brows when he would smile and had huge dimples. She laughed.
      I told her Mason was in the NICU also and told her it seemed crazy because here is my 7lb chunk baby in a room where there are these TINY babies. She laughed. She asked me alot of questions about Down syndrome and I was curious about Preemie babies as well. I have never met someone who had a preemie like she did. Made for a good conversation.
      She asked me " Do you ever get discouraged?"
What kind of question is that ABSOLUTELY! I told her until I had Mason I  knew NOTHING about downs. The scariest part is not knowing what lies ahead. I told her Mason having Downs isn't the challenge. He is perfect. The challenge is me. To slow down, to enjoy the little moments, to be patient, and to breathe! She said she felt the same way. She said she tells everyone her baby is 3 months. To avoid making her feel bad and to avoid all the questions.
        Her baby has to see all the same therapist and was on oxygen the first several months of his life. As we are talking I told her how nice it is to talk to someone who has the same fears, doubts, worries, concerns and goes through the same thing as I do. She agreed.
      The lord has opened my eyes and for that I am thankful. :)

"Has Mason had his RSV shot?"

      After Mason was sick with Croup and a Ear infection one of his therapist in conversation said "has Mason had his RSV shot?" 
      I looked at her a second and said "Apparently not because I know nothing about this shot."
     She told me that kids with Downs normally have to have it. She said "Respiratory virus (RSV) is a common virus that leads to colds in adults and older healthy children. It can be more serious in young babies, especially to those in certain high-risk groups. The shot is to help prevent Mason from getting very sick. The shot starts in Octoberish till about April, he would have to get the shot every 28 days." 
      I made a doctor appointment to talk to Masons doctor about this shot. Because it would have to be referred from him. He said typically just because a baby has downs doesn't approve them for this shot. He said babies with heart defects, respiratory problems have to have the shot. Masons heart defect wasn't in the high risk category and there is no respiratory problems at this time. He stopped himself and said you know Mason is on oxygen I bet he does indeed need to have it. 
      He told me he would look into it, and give me a call. He did just that. About an hour later I got a phone call from the Carson Care clinic to get a RSV shot scheduled. That next day we were in the waiting room for the RSV shot. If your a mom you know that shots suck!!!! And to add 2 shots every 28 days...poor Mason. 
      They weighed Mason bc they give the shots accordingly to weight. We waited for 2 FLIPPING hours. Mason got 2 shots one in each leg at the same time. Screamed until I picked him up then was smiling at the nurses like "hahahaha mommys got me now." In another 3 weeks Mason gets another RSV shot. This shot could be given to him up until the age of three. Every year he will be evaluated to see if he still needs it.

"Im sorry Mason is denied at this time..."

       Having a child with Special needs we were offered Respite care. Which is free child care for the parents to have a little break. In order for a child to be in child care in the army they have to have a physical, up to date on shots, and registered at CDC (Child Developmental Center) I went to the CDC to register both boys because they both get free child care. I completed the work for Dylan and when it came to Mason of course it wasn't that easy. The lady told me that Mason had to be approved from SNAP through EFMP. (Exceptional Family Member Program)

       Ohhhh boy. Here goes to learning something new. I got a phone call to set up a SNAP appointment. I was unsure what this was but basically its to make sure that Mason has the care he needed at the facilities. The SNAP team consists of me, the Army Public Health Nurse (APHN), CYSS Chief (or designee), Exceptional Family Member Program (EFMP) staff, and appropriate CYSS program directors. Screening, discussions, and approval to sum up what the meeting would be.

       Welllllllllll As I was talking to Masons home nurse (she was going to go with me) I said "is there a chance Mason could get denied?" She told me he is just like any other child who needs fed, played with and changed. She didn't see the problem. However in her list of things she forgot our little friend The Oxygen Tank. I mentioned it and she paused. "Ohhhh you know Stacy I forgot about that. Let me make a phone call bc he might be automatically denied just for oxygen use."  

      Of course I want my child to have all the needs possible but in my defense I didn't want him in Child care in the first place and I was encouraged by his therapists. And then for this to turn into a headache. What a waste. So Masons home nurse called me back and said "Well hes automatically denied." So the SNAP meeting was cancelled. 

      Mason has his sleep study (Mason and I stay at the hospital overnight) on Friday. The nurse continued to say  "After we figure out  the severity of his oxygen needs we will be able to do home respite. Where a certified provider comes to your house and cares for Mason. So lets give it a little time then we will come back to the Respite care." 

      I did however choose to put Dylan in childcare its 10 hours free childcare a week. I don't want Dylan to think his world revolves around his brother. He thinks he is going to go play with other kids for fun. I normally try to get appointments done while Dylan is in school but considering he is only in school 3 and half hours doesn't give me much time. We will give this a shot if it doesn't work out then it doesn't work out. No big deal. The child care is not required and he doesn't have to go the full 10 hours a week. One day at a time.

Whose in charge? ME!

      Raising a baby with special needs requires a team. This team for Mason includes a pediatrician, physical therapist, occupational therapist, speech therapist, developmental therapist,care taker,home nurse, pediatric cardiologist, pulmonary doctor,otolaryngologist, sleep doctor, and now a supplier for Masons oxygen. Its safe to say its overwhelming. If things aren't going right it is beyond stressful. Everyday I'm either on the phone, doing therapy, at the clinic, returning emails or working with Mason. On top of raising a 6 year old making sure he doesn't feel left out or put on the back burner. Also being a wife in this crazy army world.
      My focus is to have a team for Mason who believes in him, can push him to his full potential, have positive attitudes, and have compassion in their field. So far I have been blessed with great doctors and therapists who educate me and are Amazing with Mason.
     I was given this team but at any time I am free to cancel them. I am the one in charge. For the past couple months Masons developmental specialist has been coming over. She is the nicest person HOWEVER she has said somethings in the past few weeks I don't agree with, and her choice of words are offensive to Mason and to any other babies with Downs. I was giving her the benefit of the doubt and kept her on our team. Yesterday was her last chance. I had a sit down with her I asked her what her job was, and what she has to offer Mason that the other therapist don't. She told me she was there to visit, to answer any questions I may have and be more of a support for me and check on Mason.
      Throughout our conversation she was telling me how she has a daughter with special needs and a grand kid with special needs her daughter wore leg braces, and her grandbaby has autism. She said "I know exactly how you feel" That's all fine and dandy but unless she is going through the EXACT same things as I am with Mason I will disagree. I'm not saying what she goes through or has went through isn't stressful or a journey of its own. but I am saying not all special needs are the same or require the same attention.There are easier things to deal with then Down syndrome and there are much much more severe things to deal with then down syndrome. I'm not complaining about my situation but every situation is different.
      She told me she has been working in this field most of her life. As she carried on about some kids she has worked with in the past she said "I have seen some kids with Downs who don't have any muscle tone and are blobs" Okay that was it for me! Blobs? Your outta here lady!
      With Down syndrome there is a wide spectrum of high functioning or low functioning. Some may have really low muscle tone and not able to do much. But for this lady who is specializing with kids who have downs and to have no compassion in her words or common sense that she is talking to a mom with a baby who has downs was very disappointing. I learned about her marriage, (first and second) learned about her kids, her life, her experience, we rarely talked about Mason.
      I called Masons home nurse who has become part of our family very quickly and talked to her about Masons developmental therapist. I told her I am overwhelmed right now, I don't think she has anything to offer Mason that he doesn't already get, I told her I don't agree with things she said, and I could be doing alot of other things in an hour period instead of hearing her life story. No offense to her but I only want people who have Mason on their priority list. She couldn't agree more. She said I'm in charge I decide who is around Mason and whats best for Mason.
     THAT'S RIGHT I'M THE BOSS!!! haha. I called Masons caretaker (who is in charge of Masons team)  let her know how I was feeling towards the developmental specialist, and that I wanted to cancel her service. I also let her know the things that she has said and how they came across offensive. She told me she understands where I am coming from, she will cancel her service and also talk to her supervisor about her choice of words.
      I don't want to step on toes, or hurt feelings I only want whats best for Mason. I will be the judge of who is in my home not only around Mason but a 6 year old who picks up on everything (who was in the room when this was said) The End. :)
     

Lub-Dub Lub-Dub Lub-Dub

       Almost half of babies with Down syndrome are born with a heart defect. Mason was 2 days old when we found out he had a heart defect. However the heart defect Mason has isn't the typical heart defect kids with Down sydrome have. Masons heart defect is called PDA (Patent Ductus Arteriosus)
       A little bit about PDA:Before birth, the ductus arteriosus allows blood to bypass the baby’s lungs. Once the baby is born and begins to breathe air, the ductus arteriosus is not needed and it usually closes up within a few days. If it remains open (patent), there will be abnormal blood circulation between the heart and lungs.  Its common in premature babies, affects girls more often then boys, about 3,000 babies are diagnosed with PDA a year. Can cause sweating with crying or playing, shortness of breath or fast breathing, poor eating and poor growth, tiring easily.
      When Mason was 3 days old he had his first echo cardiogram given to him from a pediatric cardiologist.  She told me the hole looks like it would be closing up. He needed to be seen in 6 months. She said if they see the hole has not closed and blood is passing through they would have to fix it by surgery an incision is made in the side of the chest and a heart surgeon uses stitches or puts a metal clip on the ductus arteriosus to close it off.
      His cardiologist appointment was this morning. Last night I couldn't sleep. This was once again entering the world of the unknown. So naturally I research, my mind wonders all of the "what ifs" and I spend alot of time talking to the man upstairs to give me strength, answers, and to be with Mason every step of the way. The other day Masons doctor and I was talking about his oxygen level being low at night. One of the common reasons is because of the heart. It made me think he may have to have surgery. I hate when Mason has shots done, how was I going to cope with surgery? and my poor baby having to go through all that. 
      Masons home nurse asked me if I would like her to come to the appointment, play with Dylan, and be my support. Being an army wife requires us to be away from family who is our support system. Right now Mike is doing important classes for promotion points which he cant get out of to come to the appointments. So its me, 2 kids, and a bag full of worries. So of COURSE my answer was "yes!" well actually I think my answer was "PLEASE!" 
      I arrive at the appointment 30 minutes early. I sit in the car put my head on the steering wheel and say my prayers. I was feeling calm, a little worried and anxious to get this appointment over with. Masons nurse pulled up with a smile and a "everything will be okay" talk.  She could tell I was a tad worried without me saying a word.
      We walked in I already had the paperwork filled out (I printed it off at home) I turned in the paper work, signed in and waited. Everyone was very friendly which is always nice. Dylan and Masons nurse played while I took Masons clothes off laid him down and comforted him while  he got a echo-cardiogram done. It was weird hearing Masons heart when he wasn't in my tummy.
      She took several pictures, checked his blood pressure (with this tiny little cuff it was cute.) checked his height (27inches) and checked his weight (19lbs) She put tiny little stickers all over his chest, one on each arm, and one on each leg. Hooked cords to them she said she was taking a picture of his heart. Mason was a good baby. Not a tear. :) 
      The pediatric cardiologist came in...here it is the moment of truth. He said "Well the hole is still open,  its not causing any concern right now. As far as the oxygen its not because of the heart. I assume your doctor set him up for a sleep study?" 
      He told me the sleep study will show if he has sleep apnea, and if he will need his tonsils and adenoids removed which he probably will. After some more chatting and an hour and a half later. The appointment was over!! YAAAY! A huge sigh of relief.  In 6  months he sees his pediatric cardiologist again to make sure nothing has changed and don't need further attention. 

Thanks everyone for all your continued prayers! : ))

sleep? or no sleep?

      When I first became pregnant every mom I would talk to would say things like " You better get enough sleep now because when you have a baby you wont get ANY sleep."  After  Dylan was born he was up screaming all night because he was a little piggy and needed to eat. After he ate he would scream because he was colic. It was a BLAST! (said in the MOST sarcasm ever) 
      After having Mason I learned things were a little different. From the time Mason was born he didn't wake up at ALL through the night. I know what you moms are thinking "Must be nice." However I would wake up through the night to make sure he was fine. Knowing your baby should wake up and he doesn't is a little unsettling. The doctor said he slept through the night because of his low muscle tone. So instead of the baby crying to wake me up we had to set an alarm clock every three hours for him to eat. Weird I know.
      After 3 months the doctor gave us the okay to let Mason sleep through the night. He was well big enough he could go without the feedings at night. Shortly after Mason was on monitors for sleep apnea. The alarm would go off in the middle of the night. It sounded like a siren. It was OBNOXIOUS! The idea when the alarm would go off  meant Mason would stop breathing and I would have to wake him up. Throughout the rest of the night I was shaken up I would hold Mason or stay in his room and dose on his glider.
       Now Mason is on Oxygen. He actually doesn't pull on it he likes it. HOWEVER he doesn't stay in one spot when he sleeps so there has been times the tube has fallen off. He has been wrapped around the tubes, the tubes have fallen around his neck! AHHHHH!!!!! I'm constantly up checking on him. Its scary enough he is on oxygen but the thought of the oxygen being right there and him not getting any scares me and him being tangled up in his tubes mortifies me.

      I have a feeling I wont be getting sleep until he is much older. Oh well nothing Caffeine cant fix! :)

"I have the results, they aren't good"

Up to 60% of kids with Down syndrome have a sleep disorder called sleep apnea. When we lived in Alaska Mason was put on a sleep apnea monitor. It was (excuse my language) a PAIN IN THE ASS! Mason had to wear it 24 hours a day It was extremely loud and gave me a heart attack every time it went off.
Obstructive Sleep Apnea in children with Downs is caused by a small upper airway, enlarged adenoids, and tonsils, collapsing throat muscles, large tongues, poor muscle tone.
Mason saw a Ear, Nose, and throat doctor (otolaryngologists) to look at his Adenoids to see if they were enlarged and needed to be removed. That WAS FUN! NOT. I sat in a chair holding Mason in my lap, holding his arms down, while his dad held his head steady with both hands. The doctor took a scope went up Masons nose down to the back of his throat. Mason was scared, uncomfortable and probably in pain. He screamed and screamed. The doctor said his adenoids looked a healthy size. He could see that Mason had a very swollen throat and confirmed Mason had Reflux (which he is medicated for daily)
Masons doctor here in Colorado wanted to follow up with the sleep apnea tests. He however doesn't like the sleep apnea monitor because there can be false alarms. So he had me pick up a cpulse oximeter for a one night study. It was to be wrapped around his little toe while he slept. It kept track of his heart rate and oxygen level.
Today Mason had a check up because he had an ear infection and the doctor wanted to make sure it was healed and didnt need further treatment. I reminded his doctor I got a call saying his oximeter results were faxed to his office. He went out of the room to check on it. He walked in with a stack of papers and I said " Mason did not like that on his toe at all." He looked at his paper, and back up at me and said " The results arent good." Im not real sure what I said after that my mind was rewinding what he just told me over and over and I felt my heart drop to my stomach. He continued to tell me that the oxygen level needs to stay above 90 and Masons oxygen level was never at 90 or above it was well below it.
I cant explain the feeling being told that. Right there in the moment it was hard to swallow, I didn't know what was next. My little 18 lb baby doesn't get the oxygen he needs when he sleeps. I believe that would be scary for any parent to hear. He told me Mason cannot sleep without oxygen and he needs further sleep studies done.
Tonight I was waiting for a guy to come to bring oxygen for Mason. ahhhh! He brought in a machine, tubes, directions, 4 oxygen tanks, and a backpack to carry one in when we leave the house. I asked him if he could hook everything up, explain it to us because clearly this was new to us. He was very nice. He was impressed when we put the tubes in Masons nose it didn't bother him.
So within the next day I am supposed to be getting an appointment for a sleep study also known as a polysomnogram or PSG, is an overnight test that monitors breathing, brainwaves and muscle
movements during sleep using sensors placed on babies legs, body and head.
babies movements and noises will also be recorded by videotape. Doctor said that will be done right away until then Mason needs oxygen every time he is asleep. I will keep you all updated! Prayers are welcomed! e their tongue to relax, blocking their airway at night.