Plodding Along

We've been absent. Yep. Blame it on sickness. After grandpa left us, everyone came down with something. Rachel had the snotty head cold, Charlie another ear infection, Stephen had some viral thing that we think may have been the flu and I got the flu for sure. Christmas was kind of a bummer this year. We've also been holed up in this house because the weather has been terrible. So, needless to say, we're tired of being sick (and tired). Unfortunately, things are still not completely better. Charlie went back to the pediatrician today and has an ear infection in both ears. Rachel has a fever and her runny nose and eyes are back. Sigh. Is it summer yet? Here are some pictures from Christmas morning. The kids did love to open gifts. Rachel really knew what to do this year. Charlie just liked to eat the paper.

I hope 2013 brings wellness and energy. Lord knows the 3 cups of coffee just aren't doing it anymore!

Santa!

Rachel was all about the big guy this year. She had a very hard time waiting her turn and photo bombed a couple other kids photos just to get near him. The pictures below don't adequately reflect her joy but she did thoroughly enjoy herself. Noticed how she carefully checks out his ensemble. Poor Santa, on the other hand, had to be sweating buckets in that suit. It was warm in that room (notice my pulled up sleeves) but he was very friendly and kind to all the kids. Charlie did not get down on the Santa action this year. He's not too keen on strangers and I can only imagine his reaction to Santa. Plus, he was napping during that time and you know you shouldn't wake sleeping babies.

Fun with Grandpa...

In their defense, Rachel has a case of a sickness and Charlie is teething again, hard. Sorry, Grandpa, maybe another trip!

30 Blankets in 30 Days Update

Rachel in her hand made hat and cuddled up in a blanket.

I received the last blanket for "30 Blankets in 30 Days" last Thursday. That blanket rounded out the total to 70. Yes, seventy. 7-0. More than double what the original goal was! I could not believe it as I saw blanket after blanket come to my door and pile up in our room. It got to where it was overflowing the huge box I had saved in hopes that we would at least get it half-way filled. You guys came through in a big, BIG way. I never knew so many people cared and the families in the NICU will know as well that people DO care about them. Thank you! Thank you all so very much. I have truly been touched by your generosity.

Rachel and the Booger Man Update

First up... Rachel. She had her follow up appointment with the GI doctor. They took more stool samples to check the inflammation. Her last sample had high inflammation. If it comes back high again, the doctor thinks it's allergies and then Rachel will be tested for allergies and also have an endoscopy. If the stool test comes back normal, he is leaning towards a sugar intolerance and she will be tested for that. I'm happy we have a direction but at the same time I'm scared nothing will come out of all of this and he'll send us on our merry way. We'll see what way we are headed by the end of next week when the test results come in.

Charlie, AKA booger, is having some intestinal issues of his own. He is already intolerant to diary and soy protein, but now we have added bananas to that list. Since bananas were one of the only finger foods he liked, this depresses me. At first I thought it had something to do with the beef puree meal he had since he vomited after having it. But then he did again the next night. We skipped a couple days without him vomiting (turns out it's because we had no bananas) but then again yesterday at lunch and today after he had some in the morning. I guess it just needed time to build up in his system to cause the issue. Just like what happens with milk. Crap.

Charlie is also going to be getting speech therapy like I figured he would. Hopefully we'll be able to coax some words out of this boy! If we are still dealing with feeding issues by the time he's 18 months, I will have him re-evaluated for OT. 

Thought you would enjoy this last picture. Rachel was exhausted last week one day after school. She slept from 2 until 6 in the evening!

Dyspraxia and Hippotherapy

This is a guest post by my friend.

Bethany's Story

We were so excited to be starting a family.  My husband and I had been married for three years, just bought a house, and were financially secure.   This was the “perfect” time.  Of course I knew it might take a little longer because I had PCOS, but it took two years, two miscarriages, and a ton of medications and doctor’s appointments before we finally became pregnant with our children.

Our first appointment was at 6 weeks and we were overjoyed when they found two sacks!  We went back the next week and heard two heartbeats but the complications had already began.  The second baby (baby B as they call it with twins) seemed to be a few days behind baby A.  As the pregnancy progressed,  the gap between the twins widened.  Baby B was missing an artery in her umbilical cord. While most infants have three, she only had two but the doctors assured me that she would still obtain the needed nutrients. In the end, our B baby (which we named Bethany) was about 10 days behind her brother.  The doctors were perplexed.  At first they thought there might be something wrong.  We “passed” the initial screenings for disorders, and we decided not to go further with any genetic testing.  It didn’t matter.  We were happy to have our two miracles no matter how it turned out.  As you can imagine though, I was a nervous wreck though most of the pregnancy! She was eventually diagnosed with IUGR (Intrauterine Growth Restriction).  The twins were delivered via emergency C-section at 37 weeks when it was discovered that she had not grown since my 35 week appointment.  

While the birth was not ideal, both children appeared healthy.  They couldn’t find anything “wrong” with either of them. Bethany weighed 4lbs 15oz.  She was a little peanut – the cutest little peanut I had ever seen.  

The first few months were pure joy.  Bethany was always at the 10th percentile for weight, but was holding her own.  She had reached her developmental milestones at appropriate ages (holding her head up, rolling over, etc) until about 8 months when I really started to question if there was something “off” about our little girl.  She wasn’t able to sit up without support yet.  She had a hard time regulating herself. When she got upset, she couldn’t calm down.  I had to teach her how to self-soothe.  As she got older, we noticed she was sitting in a W position.

W leg position

Then as we saw other children her age begin to say words, we noticed she wasn’t.  A few months before her second birthday, we decided to get her tested.  The testing confirmed our suspicions – Bethany’s language was significantly delayed, and so were some of her motor skills.  She began the Early Intervention services of speech, OT, and then later, PT.  The words came, very slowly.  I waited and waited for her to be able to tell me she loved me.  It came just before her 3rd birthday.  I knew she was smart.  It was in there, but it couldn’t come out!  On top of that she was clumsy.  She looked like a wrecking ball at times.  Through the hard work of our therapists, and through our own diligence we finally got a diagnosis… Dyspraxia.

Dyspraxia is a developmental disorder that affects motor movements.  The signals going from the brain to the muscles don’t work quite right.  They need to be trained, with a lot of repetition, to learn the appropriate patterns.  In Bethany’s case, this accounted for her language delay, poor articulation, and “clumsiness.” 

At three years old, Bethany attends a special education preschool where she gets speech 4 times a week, OT twice a week, and PT once a week. She STILL cannot sit up without sitting in a W (which is making her pelvis tilt and could affect her posture/alignment), or sitting with something behind her.  She can’t cross her legs in front of her to sit like the others can because of her low tone (lack of core muscles) and the tightness in her inner thighs.  She often cries through PT because the stretches she needs to do hurt. Since she only gets it once a week, we have to do exercises at home and constantly nag her about the way she is sitting.  I feel bad always having to be “on” her and focusing on what she can’t do.  She is such a sweet girl, but she’s also sensitive.  We want her to do well, but we don’t want her to realize her limitations or to feel bad because she has to be directed so much.

Bethany has always been such a caring and nurturing person. Early on, we learned that she has a love for animals and we are blessed to live in an area obsessed with horses.  When I saw her on her first pony ride it came to me - hippotherapy! My goal was to find something that Bethany could excel in and feel good about and here was the perfect opportunity to do just that.  There is a local hippotherapy program for persons with developmental disabilities.  It’s run by a PT who knows how to get the most out of each session.  Some might ask why is riding a horse considered therapy?  Riding a horse will work all of Bethany’s areas of weaknesses. Bethany will have to stretch before getting on the horse, one of her least favorite things to do. Though this can be painful, the motivation of what is to come will help her to do her best.  Once on the horse, she cannot W sit,  her pelvis can not tilt and her feet and legs must be in a  forward position.  Three things we constantly work on with her.  Horseback riding also requires a great deal of balance, which is obtained through using the core muscles, her weakest area. That will, in turn, help her progress in the other areas.

Hippotherapy is still considered “experimental” by insurance companies and is not covered. The therapy is expensive and we will have to pay for it out of pocket. But, seeing Bethany improve in her fine and gross motor skills and her self esteem is worth the cost. We plan to pay for it through scholarship grants, if we are deemed eligible, volunteering at the stable and financial support from our families. However, that will still not be enough. Please browse my facebook page, Bethany's Hippotherapy,  and consider placing a bid on an item. We will be posting 1-2 items a week for the next few weeks. We will be auctioning off necklaces, a bracelet, a plaque, and magnets.  All are horse themed and hand made by me (Bethany will help with the plaque) and would make great Christmas gifts! All proceeds will go towards Bethany’s therapy. Thank you so much for reading Bethany’s story and for your support in helping her reach her greatest potential!

Miss Personality

Thankful

for these two boogers. :)

Here We Go Again

This sweet boy has done most of the physical stuff early and actually refused to crawl more than a week or two before deciding it was time to walk.

But Charlie isn't a talker. He can raise a ruckus when he wants to but most often he's quiet. There are some things that, at 15 months, concern me so we are going to have him evaluated by Early Intervention. I'm fairly certain he will qualify for services and so we will be seeing some familiar faces walk through our door once again.

Not exactly happy about that but at least with Charlie I can be pretty sure he will eventually talk so I'm not really worried.

It's November!

Don't forget about 30 Blankets in 30 Days! As you can see on the right, we have had some donations but we have a way to get to 30 blankets. Please donate if you can and if you can't, please repost the blog link on your blog or facebook page to spread the word. Thank you!

A New Tradition on Halloween

On Halloween, we went to Tate Farms. We picked up Rachel right from school and went. The reason we went so late was partially due to the fact that the time right before dinner can be crazy if the kids are already getting tired. But, thankfully, Charlie took a great nap before we left and Rachel slept all the way to the farm so both we rested and ready to go.

Charlie is asserting his independence. It's always been pretty easy to redirect Rachel if she decides to run the wrong direction but with Charlie as soon as I try to turn him he goes limp and flops to the ground. He gets so upset! It's comical, really. He spent a good part of the time there walking around and climbing on the wooden "tractors".

do you see the Alabama snow in the background?

Rachel had an absolute blast playing in the giant vats of corn kernels, going down slides and bouncing on a giant inflatable pillow thing. She also fell in love with the bunnies they had at the small petting zoo. she was pretty gentle but scared the crap out of me (and probably the bunny) when she decided to hug them! Stephen and I both agreed that going to the pumpkin farm on Halloween was going to be a new tradition for our family.

will anyone notice that i'm eating this kernel of corn?

Halloween was a little crazy. The kids were so dirty from the farm and dinner that they needed a bath which meant everything was rushed to get out the door. Charlie was pretty tired at this point and didn't really want anything to do with getting dressed up and walking around outside. Rachel was doing her best bedtime crazies and was a complete handful once we stepped outside. We only got a couple pictures of our fireman and bunny but aren't they cute?

she actually kept her ears on the whole time - amazing!

War

Charlie can now climb in to the toy box, Rachel's favorite place. She has declared war.

Sick of Poop. Poop and Sick.

Rachel "came down" with croup on Thursday. Thursday night she coughed through the night and I thought it was just a cold. Kept her home from school on Friday and she still seemed ok. Friday night, well, different story. Put her down to sleep and at about 10 PM we heard her coughing and making that awesome barking noise. Stephen went in to calm her and noticed she couldn't catch her breath. He brought her into our room and I could see her chest suck in each time she inhaled. Yep, it was time to visit the ER. They dosed her up with a steroid and sent her home. She got an oral steroid on Saturday that she was supposed to take until Wednesday. Rachel had croup before when she was smaller but I don't remember it being this bad or her being this crazy on the steroid. Her mood swings would make any weight lifter shake their head! And is she hungry and thirsty! I had her go back to school today because she was acting great this morning but then I got a call saying she broke down crying and needed to come home. Luckily the Doctor said we could stop giving her the steroid tonight. I hope things go better tomorrow!

The other downside of the steroid is that Rachel's follow up with her GI got canceled. It needs to be rescheduled for a later date because steroids help improve intestinal inflammation and we can't do any tests if things are altered. I'm really, really upset about this. Her poop issues have been going on for what seems like forever now and waiting even longer to figure out what's wrong with her just makes my blood boil. I have seriously "googled" everything and anything that could be the reason for all of her stomach issues and I've looked at my pictures of poo than I ever thought possible. I am tired of it! Tired of poop, I tell you!

Rachel Flashback - 3 years ago this week - only as big as her Dada's hand.

30 Blankets in 30 Days

Beautiful homemade quilt covering Rachel's isolette.

After Rachel was born, I launched Rachel and Friends as a way to give back to the hospital and NICU team that saved my daughter's life and in thanks to those who gave cheer to us in the form of blankets, stuffed animals and clothing. It was a wonderful success. I took a break from it last year, but this year I hope to deliver the same cheer we received to families in the NICU as they sit by their baby's side over Christmas. I have decided to just focus on blankets this year. Blankets in the NICU are wonderful things. They cuddle sweet preemies in parents arms. They decorate the outside of an isolette keeping light and noise out so the baby inside can rest and grow. They swaddle preemies and make them feel safe and secure. I am challenging my readers, my friends and my family to each donate a blanket - new or handmade, large or small - over the month of November. I hope to reach the goal of 30 blankets by the end of the month - 30 blankets in 30 days. These blankets will then be donated to the NICU in Women's Hospital in Greensboro, NC where Rachel was born, saved and cared for. If you cannot donate, please spread the word and help us reach our goal to bring happiness to families in the NICU during what can be a very difficult time. Thank you so much for your support. I am truly excited to deliver these gifts this year!

You can send your donated blanket to:

Maggie Fluck
111 Lea Circle
Madison, AL 35758

Rachel on and swaddled in a homemade blanket - waiting for her surgery.

Update on Rachel

It's taken some time but we've gotten back all the results from Rachel's tests. Everything came back normal except her x-ray, which showed she had a lot of stool backed up, and one of her stool tests indicated some inflammation in her intestines. It was borderline high so they are going to retest her when she has her follow up on the 22nd. She's been on a high dose of Miralax (sigh) to clean her out and I think she had that clean out at school today. Those poor women. I was told that Rachel pooped and it went straight up to her shoulder blades. I can only hope this was the last time they will have to deal with anything out of the ordinary in that part of their day. I have to say I am disappointed that she is back on Miralax. I thought that we had her constipation under control by just monitoring her food but I guess I was mistaken.

In other news, from what I can tell, Rachel loves school. Loves it. I know it's just what she needs since she's such a busy-body. When I get her shoes on in the morning she goes to the door and waits by it for us to leave to get in the car. The bad news is that she won't nap at school so when she comes home she's done and we get crabby Rachel who throws tantrums on the floor as soon as it hits 5pm. Not fun.

Pretty sure this is the face I'll get when she's a teenager.

Little boy is STILL a terrible eater. Just flat out refuses to eat anything but crunchy cheerios, puffs or veggie straws or smooth purees or pieces of banana that I put into his mouth. It's getting really frustrating and I honestly don't know how to deal with this. We have reduced the amount of formula he's been getting in hopes that he'll eat more but that doesn't seem to be working. I think I would fall off my chair if the kid actually ate a whole 4 ounce jar of food in one sitting without any cajoling.

 But he will eat benches.

 And magnets.

 And leaves.

Turd.

Here are a couple pictures from our Buddy Walk. The Chik-fil-A cow was there and Rachel had to hug him whenever she saw him.