Summer's BIG day!

Here we are...Aug. 31, 2011, first day of school!

Summer turned 3 on July 14! Wow! Time has flown by so fast. She has come so far! She has been enrolled in a birth to 3 program up until her birthday and now qualified to go to Preschool. She is getting so smart...communicates VERY well, and is getting more and more determined every day to push herself physically. She now loves to hold our fingers and "walk", using one foot at a time. This a HUGE "step" for her! :) Hillcrest is an early childhood learning center with classes that are integrated with 10 special needs kids and 5 typically developing kids. Summer goes to school in her new wheelchair (that looks like a stroller) and needs lots of help getting around. She is lucky enough to have her own personal aid all day :) So, this makes me feel better...knowing there is a "me" with her :) His name is Rob and we love him already! He is so great with Summer...she seemed to enjoy him too :)

Teacher Kathy putting Summer's name tag on while we waited for school to start....

Such a big girl! Yet, still so small....she loved the Summer size chairs and table :)

Summer with Rob.

The 2nd day of schoo (today), we put Summer on the bus....

She was okay until the driver started raising the ramp to put her on and said, "wave bye, bye, to mommy and daddy". Her face instantly crunched up and she started crying...I did too. I thought the first day would be harder, but sending my little girl on a bus while she was sad, was NOT my idea of a good time :( The driver was really nice...she let us get her a doll to take and said kids are usually fine once the bus gets going. I am picking her up today....we'll see how it went! We are so excited to have reached this milestone with her...she is doing BIG things :)

A video worth sharing

When I first found out we were expecting twins with complications, I was directed to a the Fetal Hope Foundation...an organization that helps families who experience Fetal syndromes like Twin to Twin Transfusion syndrome. From there, I found many Youtube videos and blogs detailing others' experiences. These were both helpful, theraputic, and at times, heartwarming. Though our story has not turned out to be one that lacks sadness or tragedy, I still feel it is worth sharing. It is our story....the story of how we were blessed with two beautiful little daughters. We continue to see little miracles with Summer and are thankful for her everyday! Yes, even when it is hard...she has made our family better for it :)

Here's my video...
www.youtube.com/watch?v=ZQPb3CY_wSM

The diagnosis

It's official...Summer has Cerebral Palsy.

The last few months I have been discussing Summer's condition in depth with her therapists and doc at Children's. The GI doc who has been taking care of her since she was 3 months old has been telling me for a long time that she has CP. He has explained his view point on this and always refers to things she can't do as a result of her CP. There has been no official diagnosis up to this point from the Neurodevelopmental clinic, so I have not referred to her having CP. Summer's OT has told me several times that she feels Summer is developmentally delayed, but doesn't necessarily show the attributes of a typical CP kid. According to her brain scans (she has significant scarring in the center area called the corpus collosum), there is physical evidence of a brain injury, that occurred when she got NEC (necrotizing enterocolitus) at two weeks old. NEC is such a severe shock to the system, that brain injury is a quite common side affect...her GI doc has seen many cases like hers. CP, by definition: An abnormality of motor function (the ability to move and control movements) that is acquired at an early age, usually less than a year of age, and is due to a brain lesion that is non-progressive.

I have struggled with this for a long time and in fact, I have avoided going to the Neurodevelopmental clinic because I didn't like the negative feeling I received from them after a scan she had last year. Though predictions can be helpful at times, Summer has always exceeded them. I have worried less about her progress while keeping myself in the dark, so to say. I decided it was time to suck it up and go back to see them.

Summer had an appt. last Wednesday and I was pleasantly surprised. Though the result was the one I was hoping to avoid, it is not as bad as I thought it was going to be. The nurse practitioner was very thrilled with Summer's progress! Of course, not going to her for almost a year gave us lots of time to show a lot of huge changes, ha ha! She kept referring to Summer as being "smart" and telling me that if you have a "smart" kid, they can do more than expected. They might not do things the way we would, but they get them done. She has seen several kids with a bleak diagnosis, far exceed expectations. Though it is common to identify someone with CP as having cognitive issues as well, CP only refers to the motor function and not the intellect...in many cases the brain injury has also affected the intellect. Fortunately, Summer has developed so well cognitively...this will be a huge advantage to her.

CP is classified in 5 stages...5 being the most severe. Summer is showing development in stage 3 and some things in stage 2. I agreed to have the nurse practitioner evaluate Summer's progress... According to the "Gross motor function classification system for cerebral palsy", here are some things we may be seeing in the future:

Between 2nd and 4th Birthdays

Level II Children floor sit but may have difficulty with balance when both hands are free to manipulate objects. Movements in and out of sitting are performed without adult assistance. Children pull to stand on a stable surface. Children crawl on hands and knees with a reciprocal pattern, cruise holding onto furniture and walk using an assistive mobility device as preferred methods of mobility.

Level III Children maintain floor sitting often by "W-sitting" (sitting between flexed and internally rotated hips and knees) and may require adult assistance to assume sitting. Children creep on their stomach or crawl on hands and knees (often without reciprocal leg movements) as their primary methods of self mobility. Children may pull to stand on a stable surface and cruise short distances. Children may walk short distances indoors using an assistive mobility device and adult assistance for steering and turning.

Between 4th and 6th Birthdays

Level II Children sit in a chair with both hands free to manipulate objects. Children move from the floor to standing and from chair sitting to standing but often require a stable surface to push or pull up on with their arms. Children walk without the need for any assistive mobility device indoors and for short distances on level surfaces outdoors. Children climb stairs holding onto a railing but are unable to run or jump.

Level III Children sit on a regular chair but may require pelvic or trunk support to maximize hand function. Children move in and out of chair sitting using a stable surface to push on or pull up with their arms. Children walk with an assistive mobility device on level surfaces and climb stairs with assistance from an adult. Children frequently are transported when travelling for long distances or outdoors on uneven terrain.

Between 6th and 12th Birthdays

Level II Children walk indoors and outdoors, and climb stairs holding onto a railing but experience limitations walking on uneven surfaces and inclines, and walking in crowds or confined spaces. Children have at best only minimal ability to perform gross motor skills such as running and jumping.

Level III Children walk indoors or outdoors on a level surface with an assistive mobility device. Children may climb stairs holding onto a railing. Depending on upper limb function, children propel a wheelchair manually or are transported when travelling for long distances or outdoors on uneven terrain.

Distinctions Between Levels II and III Differences are seen in the degree of achievement of functional mobility. Children in Level III need assistive mobility devices and frequently orthoses to walk, while children in Level II do not require assistive mobility devices after age 4.

So, Summer has her work cut out for her! She has shown great determination so far...I'm sure she will continue with that attitude :) For now, we keep her busy (and mom too!) with all the therapy we can...Occupational/physical, Speech, Swimming, and Hippotherapy...helping her maximize her potential :)

Say "cheese"! And she does...all it takes is a glance of a camera to get her to pose.

Tom showing Summer pictures of her...she loves cameras...she sees mine out a lot!

We went to the Star Wars exhibit at the Pacific Science Center...

A Jawa....or "baby" as Summer labeled it. Everything small and cute is a baby to her :)

Be good, you will be...

These audio recordings at each display case kept Summer entertained.

Hippotherapy with Spud. Summer goes every Friday until June. Hippotherapy is a physical program that uses the motion of the horse to help kids that can't walk or need extra muscle development in their upper bodies...Summer has both issues.

She loves to ride, but gets very tired from the heavy stretch...they are hoping it will help strengthen her trunk and leg muscles. Fridays are good nap days!

In the arcade at Great Wolf Lodge

Summer thinks her toes are yummy...now that she can reach them...

Kissing it better!

Bathing beauty

Morgan was sad after getting hurt so Summer gave her hugs...and nose honks ;)

PS~ If you are still reading Summer's blog, leave me a comment :) It's nice to hear from you!

Making progress...who knew?

Summer had a consult today with the feeding therapist at her Therapy Center. We haven't seen her since last October, so it was fun to hear what she pointed out. "Summer is a different kid!" :) That made me smile. So often, I wonder if I do enough, if all the therapy and crazy schedule is really making a difference, if Summer really is moving forward. Life, though busy, sometimes still seems to go in slow motion for her...everything is on her terms. Her feeding therapist is amazing....always upbeat and excited to see us. She feels like Summer has made HUGE leaps and bounds since she saw her last. Okay, I guess she has a point :)

6 months ago, Summer was still struggling with vomiting, both from a touchy gag reflex, and from constant ear infections. Any time she would get even the smallest tidbit of something on her tongue, she would gag and throw up. I couldn't even approach her mouth with a spoon, let alone put it on her lips or in her mouth, without her throwing up. She liked Cheetos, but would still gag if a tiny piece snuck it's way down her throat. Sometimes even something soft and mushy like mashed potatoes would offend her gag. This was so very frustrating....it felt like she could never get past it, and yet here we are!

As Summer demonstrated today, she can put things in her mouth (like chunks of Cheetos, bits of Bugles, and pieces of Pirate's Booty), suck on them, maybe bite off a piece, roll it around on her tongue with her mouth shut, and then get it out before it went too far and made her gag. She also discovered guacamole last Saturday :) A girl after my own heart! She even begged for more by opening her mouth...she actually swallowed bits of it too...all with me feeding her with a spoon! A couple of weeks ago, while in a movie, Summer was begging for my "brink". I figured, what the heck, she won't get any anyway, so I bent my Fruit Punch's straw over to her and let her try it out. I was surprised to see the fruit punch get up to her mouth and she swallowed it! Wow! I didn't even know she knew how to do that....pleasant surprise :) Of course, fruit punch is not on her menu, so for now she gets to "brink" water from a straw. She has also figured out how to blow bubbles into the cup.... very exciting progress! Her therapist told me there are some kids that just don't have the oral skills to eat enough to stay off the feeding tube...they will always need a little help. But, she feels Summer has those skills and great potential to make it work. She even asked if she could use the video tape she made of the session in her teaching. Way to go Summer!

While we were there, Summer stood up for about 2 minutes by herself...using only her hands on the toy kitchen to steady herself and my hands lightly next to her thighs. Woo hoo...her orthotic foot splints and leg braces and swim therapy has REALLY made a difference :) :) :)

So, now looking at all this information, I realize she really has made progress....and lots of it! Phew, I thought I was in trouble for slacking, haha!

Summer's new wheels

Summer's new wheels...

Summer has gotten so big (she's now over 24 lbs.!) that she is just getting too heavy to carry. She still doesn't walk or crawl, and also has a hard time with the lack of support a stroller gives. After a chat with the therapists, they suggested we go forward with ordering a wheel chair. Summer is turning 3 in July, graduating from the birth to 3 program, and starting preschool in the Fall. The school is about 15-20 minutes away, so she will have to ride a bus :( The bus drivers/teachers are not allowed to carry kids to or from the bus and the class, so she will need a way to be transported. On one hand, I have a hard with this happening so soon. But on the other hand, I have to admit it will be nice to send Summer to preschool and Morgan to Kindergarten the same year....maybe I will actually have some free time? haha.

So...a wheelchair it is.

This is actually called a Kid cart. I personally feel it is simply a cute name for a kiddie wheelchair....trying to make parents like myself feel okay about it all. :p This is a temporary loaner from the therapy center until we can get Summer her own customized chair ordered. I had a hard time coming to grips with the whole thing, but I know in the long run, it will be better for all of us...

Well, I have to say one thing...Summer sure seems to love it!

Summer gets upset when we take her out of the chair...Morgan wheeled her all around the house, parked her, and read her stories :)

We used the chair today for the first time at swimming. Summer loves the height and it is really easy to push and manouver. My hubby and I have always been too tall for stroller handles, this one is the perfect height :) It is a lot heavier than a stroller, but folds up fairly compact. I'm sure the lady in the parking lot enjoyed a good chuckle at me wrestling with it when I was packing up though.

Lots of changes!

Medically, Summer is doing fantastic! She now only has to go to her GI clinic appt. at Children's every 8 weeks! When she was a baby, we were there every week...this is a nice change :) At her most recent appt. at the beginning of Feb., Summer had gained well over a pound (she's now 24 lbs.6 ounces!), and had grown 3 centimeters. She is getting very tall and hard to carry. She still doesn't walk or crawl, so needless to say, our backs are feeling it. Summer's labs still continue to look great. Her liver function is great, and she is maintaining normal levels in all the areas they monitor. At this point, she is past the halfway mark for her predicted life expectancy! This prediction, of course, was made during her first bowel surgery at only 2 lbs. 11 ounces...they assumed she would be IV dependant, have all the side affects that would come from that, and need a bowel AND liver transplant. She is still NOT on the transplant list because her 10% she had left, is able to absorb enough nutrients to keep her growing, and still has NO sign of liver disease! Since she grew so much, the nutritionist also ok'd her to cut back on her feeding tube another two hours per day. She now has 8 hours off during the day, freeing her to try and be a little more mobile. She still doesn't consume food, but puts things in her mouth to taste them, and drinks water fairly well. Her gag reflex has gotten less sensitive, so I'm hoping she can start making progress in that department soon too...

Summer also had her first trip to the dentist yesterday. She did alot better than I thought she would :) Since she was born so premature, her teeth have grown in with very little hard enamel. She was also on TPN (her IV nutrition) for so long, it may have weakened them too. Despite these factors, her teeth looked pretty good. They are yellow and have some tarter build up, but this is to be expected. Good, strong enamel covers the layer under it, which is yellow, and makes our teeth look white. They have also noticed that kids who are G-tube fed, tend to have more tarter build up. So, we have to make sure and give her extra flouride to help combat cavities, which she may be more prone to.

When looking through the last couple of month's pictures, I was amazed at how many changes have been made in such a short time...no wonder I'm busier than ever now!

Summer has started a very busy schedule of therapy...Occupational (physical) and Speech every Tues., playgroup (like a structured preschool class), and aqua-therapy every Thurs. She loves the play time at the end of class...they have a couple of really cool swings :)

Fun, fun, fun! Summer loved her first day of swimmming therapy in January!

I caught her in the act...who gave her a pen anyway???

A budding artist...

Morgan's preschool class took a field trip to the firestation at the beginning of Feb.

Summer LOVED the fire truck!

Though content here, she was not at all happy about being removed from the fire truck...she wailed for the remainder of our tour.

Summer has discovered rolling can take her places :) She loves our hardwoods and laminate flooring. In fact, she will point at the kitchen floor and say "jumpin", when she wants to play on the floor. She scoots herself with her feet while on her back, rolls, and kicks "fast" as she calls it.

She often gets stuck in unusual places now...

A trip to the zoo on a day out of school. Summer and I were lagging behind and were rewarded with a walrus feeding :)

Summer's legs and foot muscles have always been very tight. Being a preemie, she is in danger of getting something called constrictures in her legs, hips and feet if the muscles are not stretched out, kept limber and used. She has been receiving therapy to help with this, but she is still so tight, it is keeping her from sitting, crawling, and walking. The therapists still feel like she will probably be able to walk someday, but her future is still uncertain. In order to give her the best chance possible, the early intervention in very important. In January, she got fitted for leg braces and foot splints. She has to wear the leg braces for 3-4 hours per day and the foot splints every day, all day. She even has shoes that fit over them so if/when she starts trying to walk, she will be used to the feel and weight.

Every new challenge brings another smile to her face. :)

Summer checking out her new legs

Look at Summer...she has gotten so tall.

Little drama queen...

Little Tom was trying to get her stand...she wasn't going for it. When she cries now, she starts crying, clasps her hand over her mouth, and in a very pathetic voice, says "SAD".

Summer seems pretty darn happy despite her double "casted" legs!

She actually flattens her feet with all her gear on...I guess she really has no choice ;)

She has been wearing the splints for about a month now and we have already noticed a HUGE difference in her legs and feet :)

Summer's first real haircut. Since she still hangs out on her back alot, she has a spot that rubs the hair short. Other parts of her hair have gotten long around it and it was starting to look like a mullet. So, it had to go.

Riding a duckie at the park...she loves to say "Wheeee"...I have to make sure she's balanced and take the picture quick....before she falls off. Yes, she has fallen off things bofore with this tecnique :( Bad, bad, bad, paparazzi mom!

Summer's Cat in the Hat shirt...she loves him :)

New shoes! I got these shoes at the Orthotics center. They are huge on her feet, but not when she has her orthotic foot splints on. They even have a squeeker in the heel.

Reading with dad and Morgan. Summer's new favorite books are the fun rhyming Dr. Seuss stories....especially "The Cat in the Hat". She also loves the cartoon Cat in the Hat show on PBS. She calls it "Hat" or "Cat" when she wants to watch it :)

Little miss on her throne at playgroup. She tends to push her hips forward alot and slide right out of every seat she is in, so the therapists are trying to add some props to the seat to help her stay in it.

She's getting the little stuffed monkey ready for the

"Monkeys jumping on the bed" song...her favorite :)

...and bonked his head! "Bonk!" Summer says as she bonks her own head with the monkey, followed by "owwwwch"... :)

"oh, poor monkey...give him a hug"

Popping bubbles!

Again at swim class. Last week she actually grabbed onto the wall and played "peek-a-boo" with me :) Holding onto things can still be a bit challenging for her...

The ducky quacked her up! he he he

Stretching a little far! It's a good thing for Summer that she now has an 8 hour time period every day that she can be un-hooked from her feeding tube! ...it tends to restrict her at times...I have even heard her yelling at it, "BACK. PACK!" haha.