Still Swinging

It's been a while so I am posting a lot of pictures. This is a picture of Kiya her first time in her swing. The PT at the Neonatal FUP told us we have to try and do everything with her that you would do with a "typically" progressing one year old providing modification where needed. So I went home took a good look at the swing and said "okay Kiya we can do this." Of coarse Kiya already new that. It's her mama that feels scared. Kiya has been so patient with me. Letting me progress as her mother. Seeing her in the swing was a great feeling. She gave me a beautiful smile and it felt like we were both flying. It's the simple moments that make the world disappear and it's just the two of us. They are moments that I couldn't fully appreciate with my boys. With Kiya time has slowed down and I get to absorb her greatness everyday. Last week Matt and I went to the park to play with the kids. I held Kiya and watched Matt and the boys as they explored another planet in their imaginations. I was filled with so much gratitude. Maybe its because the air is getting colder and I am reminded of how cold the winter was for us last year. Kiya wasn't with us and we were not whole. Now I can hold her whenever I want to . I don't have to try and adjust monitors, pick lines, oxygen, IV's and NG tubes just to hold her. No nurses give me a limit on how long I can love her. Now I can rock her and sing to her at the same time without worrying about over-stimulating her. No more needles in her head and alarms of warning. Now she breaths the air from the sky and is cared for by the ones who love her the most. I know her by looking in her eyes. She heals me.
In the midst of winter, I found there was within me and invincible summer~ Albert Careb

No One Puts Baby In A Corner

What a busy month! Lex is in 1st grade, Mason is in preschool, Kiya is being adorable and I have noticed that my crows feet are starting to look more like weathered trenches.
Kiya's physical therapist brought us a corner chair for her to sit in. Matt always says "no one puts baby in a corner," but this is doctor ordered. I must say I love the chair. It is so great because I a can sit her down for a minute while I am doing something and she isn't just lying on her back all the time. It also counts as therapy so I get to feel a little less guilt for the day. The corner chair requires her to use her core to stay sitting up. We need her core to be stronger for just about everything that she needs to do. Kiya is 11 months now. Her favorite thing is being "toted," or laying on her back. The chair gives her a new view of the world. Matt says she looks like a school principle and he is constantly apologizing for not finishing his homework. She does look a lot like a school teacher in the chair. It is adorable! I cant wait until she can sit up on her own. She has some tightness in her hamstrings and adductors which may be contributing to her difficulty in sitting. We are doing stretches and I massage her legs with an herbal treatment to stimulate them. On Thursday I went to the Neonatal Follow Up Clinic for Kiya's 9 month appointment (adjusted age.) I saw six different doctors; psychologist, physical therapist, optometrist, audiologist, pediatrician, and the nutritionist. I was at the clinic for six hours. This is a very dreaded appointment for all the moms who have to do it. I was so exhausted by the end of it. Audiology was the last appointment and we went into a high tech sound room. I sat with Kiya on my lap for the study. The audiologist was watching us through a two way mirror. All of the sudden Kiya did her tell tell cough and I lifted her as quickly as I could and held her over her car seat. She threw up everywhere and the doctor came running in. Vomiting unfortunately is a very common thing for Kiya. She threw up today in Lowes. I really wish we could figure out why and I rack my brain day after day in search of the cause. I might suggest a barium study to her pediatrician.
Mason likes preschool because he got to eat cake one of the days. He cries every time I drop him off, but is super happy when I pick him up. His teacher is really sweet with him despite his vocal dislike for everything. On Sunday we attempted nursery. After about 10 minutes the nursery leader came into Sunday school and got Matt. She explained that Mason was very specific and said "get out of your chair and go get my dad." That's my little boy.
Lex seems to like first grade. I really am not in love with him being gone for so long. He hasn't been eating his lunch because he feels it takes away from his recess time. Wish I had a stronger desire to go down a slide than eat. He has told all of his classmates that he will invent a flying bicycle and has invited everyone to come tornado chasing with him.
Thank you Grandma Squishy for taking me to the grocery store and buying me $20 worth of chocolate so I can be nice to everyone.
Kiya's New Chair






















At the Neonatal Clinic






















Mason wanted the Eva figurine from the movie Wal-e, but I didn't want to pay for it. Here is my cheap skate version made out of a rock. I guess its a step up from when I used to hot glue and staple my clothes together.

This is what happened when I asked lex to help me with some weed removal. Who new Kiya's feeding IV doubled as a trash bag holder.

Today I went to Kiya's physical therapy appointment at the Pediatric Rehab Center. I began the session by warning the Dr. about her overwhelming cuteness. After he acknowledged we began. This was the first time that Kiya has been in this intense of a therapy session. Normally KOTM comes to my house for a half hour and shows me how to do the therapy for Kiya. Today we had almost two hours of intense physical therapy. Kiya hated it! It was so hard for me to sit on the chair and watch my sweet angel baby crying. The therapist did a series of stretches and manipulations to get a baseline for where Kiya is at currently. I think she felt scared and really out of control. She has a hard time taking in the world around her especially in such an intense way. I have to meet with this therapist twice a month now so this brings my therapy schedule to 8 times a month. That's just therapy, not to mention her other doctors appointments and oh ya I have two other kids that have there own schedules and need love. Today was not the greatest. I feel like every time I go an appointment for Kiya I am opening a wound that hasn't had time to close. I could feel the tears swelling up in me by the end of her session today. Each new doctor has to go over her chart. I have to re-explain every detail of her birth and the aftermath of that terrible day. Then I have to explain what she is doing, what she isn't doing. Then they tell me the reason for this or that. I find myself asking a familiar question "why did this have to happen." Most days I am really strong because I focus on Kiya and my hurt and the world goes away. Today I am reminded of all that still hurts. Kiya's physical therapist told me to look at everything like a snow packed driveway. To walk outside, get my shovel and take it on shovel full at a time. I have had to take this entire journey one day at a time. An hour at a time. Today I felt overwhelmed by all the physical therapy, feeding therapy, massage therapy, moby therapy, play time, and nutrition management I need to do everyday. There is so much that matters bearing down on my shoulders. Today all I could see was a driveway filled with snow. Maybe tomorrow I can find my shovel.

My Mason

Mason started his first day of Preschool this morning. He begged me not to take him so it may end up being a temporary thing. He definitely has some emotional issues/separation anxiety from the three months we were in an out of his life during Kiya's hospital stay. I feel terrible that it impacted him so dramatically. Mason is one who loves being at home and loves a schedule. I have dedicated this post to my little boy who makes us laugh every day. It is crazy to see these pictures and realize all the time that has past and I feel a twinge of regret that I didn't embrace every moment of my healthy pregnancy with him. That I didn't cherish the opportunity to breast feed him and bottle feed him. That he ate with his mouth all together. He walked right on target, talked right on target, developed right on target. I didn't appreciate the miracle enough. He has had to be tough, independent, and self sufficient since the birth of his sister.Before Kiya was born he ate dinner on Daddy's lap every night. He had to grow up so quick and today I am feeling a bit of sadness for all that's past.

Why We Love Mason

1. Mason keeps us laughing! His constant shenanigans and popeye persona are a familiar humor in our home.

2. He has made me into the worlds best treasure hunter. Everyday he hides something like my phone, or my keys and I get to search for my treasure with no clues until I find it,

3. Mason keeps me in the moment. It is hard to get too worried about the future with Mason growling at me and demanding that I build his train track so that Cranky The Crane can yell at everyone.

4. He can tangle anything from dental floss to cell phone cords. Everyday is a new surprise. Sometimes I go to sit down and one chair has been connected to the next with dental floss. I spent an hour untangling the wheel of his scooter yesterday so he could ride it. His most ingenious tangle was attaching himself to daddy with string so that daddy couldn't go to work.

5. Mason is a good cuddler- he still wants mama to hold him

6. He is very excited and energetic. If Mason is in the room, everyone will know it.

7. He keeps me on my toes by unfolding all of my laundry, redistributing my dirt piles while I am getting the dust pan, pulling out my flowers, and jumping on my back while I am mopping the floor

8. Even though it has been hard on him to have a new sister that gets a lot of attention from everyone he loves her deep down. He cries when she chokes or hurts and always wants to make sure that she is okay. He gives her belly blows and baby toys. When Kiya gets an ouchie, Mason wants to hold sister and he tells her "its okay choo choo."
WE LOVE U MASON!

Hydrocephalus Walk

The Hydrocephalus Walk is Saturday of this coming weekend. Here is some helpful info.

Why we should walk
Supports crucial hydrocephalus research and program services.
In 2010 ‐ over 8,000 people participated in 25 HA WALKs across the U.S., raising more than $730,000!
HA’s target for 2011 is 9,000 walkers raising $830,000
Hydrocephauls Association’s mission: to eliminate the challenges of hydrocephalus.

When?
Date:
September 3, 2011
Location:
Sugarhouse Park
Address:
2100 South 1500 EastSalt Lake City, UT 84106

Event Location:
Need directions? Click here for a map

Event Schedule:
Breakfast and Festivities Begin
9/3/2011 7:45 am - 8:00 am
Check - in for Hydrocephalus Heroes (Kiya)
9/3/2011 8:00 am - 8:30 am
Check - In for all participants
9/3/2011 8:30 am - 9:00 am
Opening Ceremonies and Team Welcomes and WALK begins
9/3/2011 9:00 am - 11:00 am
Fees:
Participant: No FeesWALK 2011 Participant

Growing Up

Today was Lex's first day of school. I am having a hard time with the all day concept. I can't believe that he is already this old! I am looking forward to picking him up.

Last week Matt, Lex, and Mason went to San Diego for a boys trip. I think that Lex had fun, but Mason had a hard time being away from home. Matt gained a new appreciation for me and has decided that he doesn't want to switch places with me anytime soon. Me and Grandma Squishy took Kiya to St.George for a non-stop shopping adventure. We spent the trip eating out, shopping and relaxing. I have decided that I would make a very good rich wife. It was so fun to go to the stores without the sighs of my disgruntled husband. I felt a tear forming in my eye as we left the condo and my fantasy life. It was nice to have a break anyway.

Things are going good. Kiya rolled to her tummy for the first time ever today during physical therapy. Matt and I were so excited! Right now we are working on sitting, rolling and fine motor skills. We will be meeting with a new therapist with Kids On The Move and also going to outpatient physical therapy to meet all of her needs. My schedule is going to get crazy. Kiya's infection has fully resolved and her vomiting has decreased immensely. We are getting a z vibe vibrating therapeutic spoon to help her swallow more quickly. Oral feeds are going about the same although I have gained some weight showing her how to eat like mama.

The Hydrocephalus walk is approaching. September 3 at 8:30am registration begins at sugarhouse park in SLC. I would like to get a head count for Team Kiya so feel free to post a comment if you plan on attending. It will be a great unifying and empowering experience to be among other superstar children like Kiya.

Nervous Breakdown

I am not sure, but I think I may have officially lost my mind. Saturday I went to the salon and watched my hair turn from blond to chocolate brown. Some may be worried that I am in the witness protection program, but have no fear I have just had a breakdown. I can control the color of my hair if nothing else. Lex says I don't look like his mommy, Mason could care less, and Kiya loves me no matter what. Matt says he loves it, but he has learned not to say otherwise. I am still adjusting to the change, but then again change is all I know. We went to the park today and enjoyed the sunshine. Kiya has started saying DaDa! This makes my whole month. It is so great that she has the ability to progress with sounds and talking. Not to mention it may very well be the cutest thing I have ever seen to see her trying so hard to get the words out. I don't think it is intentional (Matt would disagree), but it is the next step that a child should make after the initial vowel sounds. We are increasing physical therapy and starting with outpatient therapy as well as Kids On the Move.

Lex is going to first grade soon and I have been trying to block the idea out of my mind. It is so strange to have him in another persons care for that long. I am really going to miss him. I will bring a box of tissues and a locket of his baby hair on his first day to comfort myself. I have signed Mason up for preschool, but I can already see it ending in disaster. I think he is going to have a fit when I try to leave him. He already does that with nursery and other places. The other day I went to a friends house where we left him a few times when Kiya was in the hospital. He immediately gummed onto me and would not let me put him down. I don't think Matt and I realize how much this trial has impacted his life. Matt and the boys are going to San Diego and I think it will be so good for Mason to have one on one time with his daddy again.