The end of another year

It’s the last day of the year and I’m finally inspired to write a post, a little catch up on the life of River. Now recently we had a check-in with the dietician back in November, and at that time we had tapered down some of her tube feedings, in hope it would encourage her to eat more at school. Her program, Head Start, provides breakfast and lunch, and of course most of the time River just picks lightly at her food. It would have been counteractive to send her with a full tummy in the mornings. So on that last visit, which was two months after the September visit, she only gained 3 ounces, she was at 27lbs 4oz! ARGGG we said.

Princess Bubblegum and Finn, Halloween 2013
Princess Bubblegum and Finn, Halloween 2013

So at that appointment the dietician recommended we change the formula we’ve been giving, to a higher calorie one. Previously she was on a “1” which is 240 calories per 240 grams, 1 calorie per gram. We have now started giving her Boost Kid Essentials 1.5, which has 360 calories per 240 grams. Her recommendation also was to not necessarily bolus her more formula but to just offer this, and hopefully get 10 ounces into her a day. Well we are lucky if we get around 7-8 ounces in her a day, but we weighed her and she has gained over a pound in the last month!!! She weighs in at 28lbs 7oz (according to our scale)! We were very thrilled by this development and are happy with this new formula. Her oral eating and drinking remains at what is usually is. She eats, she drinks, but if left on her own, doesn’t gain weight. We believe she may have to be on her feeding tube for much longer than we hoped. We still have tentative plans to start another weaning trial in the late spring, probably after her 4th birthday. The plans hinge on weight. If by then we have packed some extra cushion onto her little frame and her growth is on track then we will discuss this with Dr. P.

2013 School Pictures
2013 School Pictures

Whatever!! River is River, and she will do what she wants at her own pace, I’ve come to realize I’m only here to assist, not direct. Preschool is going well. As we suspected, and teacher confirmed, she is definitely shy. She tends to not speak up or talk much during class, but usually enjoys herself and gets along well in the activities(sometimes herded and mothered by many adoring girls, sometimes a little too much). I’m really hoping she’ll open up more next year. She is only 3! She is also the youngest and smallest in class, and is very intimated by all the rambunctious 4 and 5 year olds.

River @ College
River @ College

What River did this fall was help me complete college. Well, she at least helped win over one of my professors! I graduated with my BA in Art this quarter at The Evergreen State College. The last 2.5 years have been a whirlwind and sometimes I can’t even believe that I did it, all the while taking care of this little munchkin. This is where other people came in,  because I certainly didn’t do it on my own! I have to bow down to the excellent assistance provided by my husband, friends, and River’s nanny Patty for all the pick-ups and drop-offs and time and energy spent helping me and my family through this time! Woo Hoo I’m done!!! Onto to the next phase!

Christmas was good for our family, besides the pesky long-living cold River contracted, full of high fevers and buckets of snot. We managed to get up to the snow once, since it refuses to fall down here in the Puget Sound much. Leavenworth was beautiful and exciting, even if overwhelming in it’s crowd size! River’s favorite gifts this year? A fairy puzzle, a calico critter car, and some of those cute stuffed animals that come in purses. Not too mention the gobs of Hello Kitty clothes and books, she still loves good old HK.

Her speech is coming along well, she has added many more words to her daily vocabulary, even if they are still hard to understand. She wants to be understood and tries her best! I’m starting to think though that a dx of apraxia is not that far-fetched. Not that it makes a difference in treatment, she receives the necessary speech therapy, regardless of dx! And I have heard of other cases of siblings both having Apraxia. So with age 4 around the corner, and listening to other toddlers much younger than her speak so clearly, I am truly wondering if Apraxia isn’t the culprit.

I love my children, they, so cliche, complete me! Apraxia, feeding tubes, surgeries oh my! can’t stop us. Those do not define us, what defines us is how we deal with them and how we continue along on our journey.

Sledding in Leavenworth, WA. 12/21/13
Sledding in Leavenworth, WA. 12/21/13
Crazed kids on Christmas Eve
Crazed kids on Christmas Eve

Some updates

In a few days our lives are going to change a bit(understatement) when I return to school. Basically like going back to work I’ll be gone most weekday normal hours. My River will began a new phase in her life with the transition of having a nanny! I am super nervous of course! I have been a stay at home mom since losing my job when I was pregnant with Ewan! Some part of me wishes I could give as many years of SAHM to River, I feel that I’m taking something away from her, but everyone says it will be fine, even the doctor. So I’m going forth with my decision and placing our families needs and my own in front of her having me 24/7.

River and I at Snoqualmie Falls after the walk

But on to the updates! Last Sunday we attended the Puget Sound Walk for Apraxia up in Snoqualmie. It was so great to see an event like this for kids with this condition. It was small, but they raised an amazing 8K for the cause!! We were able to meet and play with families like us. Ewan immediately took to playing with 9 year old Samuel who has a severe level of Apraxia.

River has recently had many feeding therapy and physical therapy appointments, which will soon go down in frequency due to our new schedule. She definitely experienced a setback in all departments due to her back surgery. Just in the last few days she seems to be back to the level she was at before surgery.

River with her PT Jean and some shaving cream

Yesterday she had her 18 month check up! It went great, although the 3 shots River got might make her disagree.

She weighs a giant 23lbs 5oz! And she is 31.5 inches tall. That puts her at the 36th & 46th percentiles! She has been a little feverish since the vaccinations and I just hope that ends soon, we have our last feeding session today for 4 weeks. In about 3 weeks we will have her GI clinic visit.

Ewan will begin kindergarten again following a gnarly teachers’ strike here in town, River will begin hanging out with her new buddies, I will begin my new college career and Pete, well Pete gets to do more dishes and cooking in the near furture. I’m sure my blogging will suffer some but I will continue to keep up on it when I can!

The start of the Apraxia walk
Daddy and Ewan in their orange tees
In feeding therapy with some flavored tongue depressors

Our September 11th

Happy Birthday Ewan!

6 years ago, August 27th, I was only 32 weeks pregnant with my first child, a yet unknown sex. Pete and I, experiencing a non-eventful pregnancy, were taken pretty aback when my water started leaking. I dutifully went into the hospital, never to escape, duhn duhn duuuuuhhnn.  I was due around October 15th. In the emergency room in St. Joseph’s they took me to delivery, and gave me something to stop the labor, which wasn’t even noticeable except by the machines.  After two really lame weeks of bedrest in the hospital, with my water leaking more and more each day, they decided to induce me. A few days into my hospital stay I decided to find out the sex during an ultrasound. And after 36 hours of super duper awful labor, my beautiful son Ewan Ryder was born at 12:24AM September 11, 2005. He was born at 34 weeks along, but yet a very healthy weight of 5lbs 12oz. Imagine how big he could have got?!?

Ewan

A NICU stay promptly followed. We were very devasted to experience this reality. The NICU is no ones ideal situation.  He didn’t have any serious conditions, but as most preemies are, they are sleepy. His breathing took a few days to become normal, and he took many days to get in acceptable feedings. 10 days in the NICU, then he came home! He was a classic preemie, sleepy, a slow and weak eater, but each day he grew stronger and ate better. I had to pump for over a month with him, and he had to bottle feed at first. Fortunately we were able to switch him over to breast, and he thrived at home and never looked back.

Ewan was and still is a delightful personality. He is happy, he is kind, he is loving. My first year with Ewan was a first-time mommie’s dream. We floated through it and were very happy with our new parenthood lifestyle.

At around 12-15 months we noticed his speech delay. At 18 months our doctor was aware of our concerns. At 2 years old he is finally given referrals for speech and hearing. He was wait-listed for intervention. And after many appointments and exams, he finally got his first speech therapist. He was about 2 1/2 years old when we started. He had already been attending a co-op preschool, and I continued to keep him in preschool. At 3 years old he could finally go to Childfind, and they got him into a class at our local school. He has been receiving steady speech therapy ever since. At 3 years old he could finally call me Mama. At around 3 1/2 years old, his SLP finally felt like he could be diagnosed as apraxic.

Childhood Apraxia of Speech, his condition, finally gave us some answers. At least we could understand that this is treatable and there is a light at the end of the tunnel. It is rare, and we have never met another family or child with it. CASANA has helped provide resources and information. We will be attending a walk, ourselves, next weekend up in North Bend. Even though North Bend is a healthy hour and a half drive, we feel it’s important to show Ewan others like himself, and for us to meet the families.

Our team page

The Puget Sound Walk for Apraxia of Speech is September 18th, 2011.  Today my baby boy, turns 6!!! He is such a child now, not my baby! Kids this age are very fun, but every once in a while I wouldn’t mind holding my baby again.

Mama love
Julie Cross, Ewan's long time speech therapist and friend

 

Walk for Apraxia Bountiful

Next Saturday, May 28th, there is going to be an awareness walk beginning at Bountiful City Park, in my home town of Bountiful, Utah. It’s really hard for me to not be there! CASANA, The Childhood Apraxia of Speech Association of North America, has been having these walks for several years, and they are sponsored by who ever wants to start one. I just don’t have the time or energy to organize one up here.

http://www.apraxiawalk.org/

My son Ewan has apraxia, and it’s a little known speech condition, that ranges from mild to severe. Apraxia was a difficult blow to us as first-time parents. Something we had never heard about. Even his speech therapist had rarely seen a child with genuine apraxia. It takes some time to diagnose, since speech disorders and delays are hard to distinguish in toddlers. Ewan began speech therapy when he was 2 1/2 years old. I first noticed a difference between his speech development and his peers when he was about 15 months old. He just wasn’t doing things my friends children were. At 18 months old he had a significant lack of speech, but the doctor said it was just too early to worry about, all kids develop at different rates. I totally agree with there being different rates, but at two years old it was very apparent there was a huge delay in speech. Finally after referrals and waiting lists, Ewan had his therapy begin in March of 2008. He is still seeing the same therapist, Julie Cross, at Children’s Therapy Center in Tacoma. When he first began going to her they did a battery of tests to see if he had any commonly known conditions that are associated with speech problems. Autism and autism spectrum disorders and other mental conditions. Thankfully he showed no real signs of any of these other things. It was narrowed down to just his speech, a motor planning disorder. About a year went by with no real diagnosis, and then one day Julie popped the word Apraxia on me, and when I looked it up, it fit. And I was very scared. His story and symptoms lined up with other children with this disorder. Apraxia is extremely hard to overcome. But it is overcome-able. Each and every sound that we utter from our mouths without effort takes extreme effort for a child with apraxia. They have to teach each muscle in their mouth to do the right thing, it just doesn’t come naturally. Ewan will probably remain working with SLPs until far into grade school. It’s quite normal for these children to work at it until they are teens. But as an adult he should be well understood, and most people won’t even notice the small nuances in his speech. Our great joy one day was when we met a 20 year-old girl at a wedding who had apraxia. You would have never known it! She was diagnosed late, and didn’t receive proper therapy until she was 5! We were elated to speak with her and know that everything would be alright for Ewan.

Ewan, the coolest kid I know

My two best friends and my mom are going to walk in the Bountiful walk next Saturday! I would appreciate you all visiting these websites to read up on it! There is also a walk pledge page to help fund research and awareness of Childhood Apraxia of Speech. My hope one day would that it will be a well known disorder and a wide acceptance and a lot of resources for parents and children that are affected by it! The more knowledge about this disorder will lead to better therapy services for children. It will lead to more affective therapy. It will lead to more SLPs and their education.

Right now when someone asks us about Ewan, we just say he has a speech disorder. I don’t even go into the details because it’s so complicated and most people don’t know what I’m talking about!

Here is my friend’s pledge/donation page:

http://www.apraxia-kids.org/faf/donorReg/donorPledge.asp?ievent=468933&lis=1&kntae468933=6AF20B714FFD4813A35CF74C911A6BC7&supId=324932137