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.