Saturday, February 27, 2010

Home!

Ok, we're alive. And home.

Thankfully it was only croup. Everything else came back negative. But, like every normal childhood illness with Kendall, she's not the norm. They gave her the Racemic Epi treatment and then watched her closely. We left with a still croupy baby, but crazed from the steroid and treatments. When she was calm she sounded OK so we were allowed to leave! I'm very thankful we didn't get sentenced to a night there. I'm sure the fact that they don't really have any beds didn't hurt.

I don't regret going to the ER at all. I usually think twice about it, fearful we are going to get there and she's going to sound fine and we'll be the parents who cried wolf. Sooner or later I'll get over that. But, of course, the night air did help her on the way in and she did sound better. I whispered in her ear to put on the theatrics for the nurse at the front desk so we could go straight back and avoid the germ-infested waiting room. Kendall then proceeded to lift her head off my shoulder and flash a big toothy grin at the nurse. Not quite what I had in mind.

But, being frequent flyers has its benefits, I suppose! No wait, and a private room, complete with warm blankets and peace and quiet made our sleepover less miserable. Our ER Dr. was great and so was our nurse.

Our orders were to touch base with the diabetic educator first thing today when sugars were off. So I just did that. We're pretty clear on what to do now. And Kendall already looks a thousand times better.

Endocrine stuff is so complicated. Sometimes the numbers just spin around in my head and it takes me a while to figure out the correct action. Sorting through that stuff when you haven't slept in 2 days is even harder. Thankfully our Diabetic Educators are the best!

Thanks for all your prayers...

ER

So we are in the ER because Kendall went from runny nose to respitory distress very quickly. We immediately bypassed a super crowded waiting room and were taken back to a closed room! Kendall was started on steroids and breathing treatments. She's finally asleep but still sounds yucky. Justins sleeping sitting up and I'm in a very uncomfortable chair bored out of my mind. In the room next to us a little girl stuck a peanut up her nose and her mom thinks its the end of the world! We are waiting to find out if we will be admitted or get to go home. Either way since its 3am I guess I won't be running at 7! Oh well. Hopefully sugars don't go crazy and we will survive this. On the bright side, she doesn't have RSV or the flu.

Friday, February 26, 2010

ugh

Kendall is sick again. Super snotty and just plain miserable. She's not running fever, but has not slept at all! Last night she fussed until about 2:30 when we gave Tylenol. Then she woke up in a startle about 5:30 with a very stuffy head.

I thought she was OK, so we went to our Speech Evaluation at Monkey Mouths. (more on that another post) Then on the way home she fell asleep for approximately 20 minutes with her mouth wide open. When we got home she was awake again and really fussy. Lots of suctioning, Tylenol, and 2 breathing treatments later, not much improvement. Right now she is laying red-nosed on the couch just kind of zoning out. Poor child. She needs sleep. And so do we!

Tomorrow I'm running the Cowtown half marathon. I'm excited since it will be my first time to do the Cowtown. I've run other half marathons, but have always wanted to run this one. I'm confident I will be fine physically, but I know I'll be worried about Kendall the whole time. She, of course, will stay home with Daddy. Maybe one of these runs Kendall will be well and able to cheer me on.

I'm so sick of her being sick!!! Ugh!

Wednesday, February 24, 2010

What a Difference a Year Can Make







Yesterday I was thinking about all the progress Kendall has made over the last year. One year ago we were given the diagnosis of Infantile Spasms. We were told she would be severely disabled. The life expectancy I found out when I asked (something I have learned NEVER to do!) was early childhood. They said Kendall would never be normal. She wouldn't walk. She wouldn't talk. She probably wouldn't be able to communicate much, if at all. We had heard all these things even earlier, but the firm diagnosis of Infantile Spasms made things so much worse.


That was a hard week. I started to blog more regularly. We started more, stronger, seizure medications. Because of that, her personality was swept away. I was filled with fear and uncertainty. I was still working. Still trying to juggle being a full time mom to two kids and a full time worker made me cranky a lot of the time. My mom was receiving bad news about her health and we weren't sure who was going to care for Kendall. I think I even thought there was still hope in finding her a daycare~! The financial burden of all the medical bills pouring in weighed very heavily on me too. It was this week one year ago we finally completed our Nursing Home stay and were able to qualify and bypass the wait list for the Medically Dependant Children's Program (and receive Medicaid secondary to our insurance.)


One year has passed. And while I never could have imagined we'd add Diabetes or a g-button to our list of things to be concerned with, I feel Kendall has made a ton of progress. She's still working on lots of muscle stuff. We receive some sort of therapy once, sometimes twice or three times a day. We have nursing help which has drastically improved my mental state! But socially she is doing amazing. She knows when someone gets to our house. She greets them with a smile. She also knows when we walk away. She knows when its time for bed, and like any almost two year old protests. She smiles and babbles and can entertain herself for short periods of time. She is her own, unique, beautiful, little person. She enjoys swinging, bouncing, and riding in her chair. She loves bathtime. And car rides. She thrives on routine and when you tell her what you're going to do next, she holds you to it! She can work switch toys. And is steadily increasing her ability to make choices.


Thankfully we found the Ketogenic diet in this past year and were able to keep those darn seizures at bay. We have too many Dr.'s appointments and therapy appointments, but it helps me also to know there is a team of people supporting us through her progress. So when I look back on this year, Kendall has made definite strides. Her vision is improving by the minute. And I just know one day she will sit up on her own, and maybe even take some steps. I've always heard that kids with Cerebral Palsy do things in their own time. And now I believe it! Kendall has her own schedule of events. I can't wait to see where we are a year from now.




Monday, February 22, 2010

Gaining Strength








video





Kendall is feeling much better. She's getting her strength and personality back... Check out the video.



We had a great weekend. Justin made Kendall blueberry (Keto-cal of course) pancakes on Saturday morning...and she loved them. She's been eating a lot of fruit and cream, and whatever cream she doesn't eat, I've been pushing through her button. This gives her an opportunity to have more flavorful meals.



Our OT made some hands splints for Kendall to wear. Her purple neoprene ones are really difficult to get on, and since she doesn't really fist with her thumb inside them they were pretty pointless. She isn't bothered at all by these, and they place her wrist in a functional position. Hopefully she will begin to bear weight on her hands again soon. Right now, they are very sensitive. She doesn't have any aversions to different textures, just putting weight on them.



So that's really all that's been going on here lately. I haven't had any pressing information to share....and I think of that as a GOOD thing :)



Friday, February 19, 2010

Prayers for Corey

A month ago Corey was a completely healthy, vibrant, full-of-life, energetic, little boy. He got sick. Had a high fever. Had a seizure. Had lots of meds pumped in him. Was hooked up to a ventilator. Was diagnosed with viral encephalitis. Had a good report. Was undiagnosed when he wasn't getting any better. Then there were thoughts he had a Mitochondrial Disease. Tests were run. Specific types of Mito came back negative. Had more seizures. Had EEG leads hooked up for constant observation. Had an NG tube placed. Had a central line placed. Had more seizures. Had MRI's to asses damage. Had a pheno induced coma to stop seizures. Had more seizures. Had tons of Dr.'s with tons of opinions and more medication. And so on.

They are still at a loss as to why this happened. But seizures cause damage. The damage causes more seizures. The brain tissue dies. Fluid forms in its place. And all of a sudden a totally healthy beautiful 3 year old is given a grave outlook. Dr.'s evaluate and report the worst outcome. Now a family with a totally healthy 3 year old boy is faced making decisions based on quality of life, a possible ""vegetative" state, facing a trach, g-button, limited mobility, lifelong disabilities.

Corey is very dear to one of my best friends Liz (pictured above.) It has been an extremely emotional few days, and I ask for all of you to lift up this family in your prayers. We are praying for a miracle at this point. Corey is a fighter. He can prove the Dr.'s wrong. We all know kids are way more resilient than we can comprehend. Most of us have seen or heard of MRI's that don't match the child, and children who don't match their MRI's. Physical Therapists always seem to have a more hopeful approach (and sensitive way to deliver it)than the Dr.'s.

As a "last resort" they are putting him on the Ketogenic Diet. This has worked a miracle for my daughter, so I pray it does the same for Corey.


A COMPLETELY healthy 3 year old is now on his 5th week in the ICU at Cook Children's Hospital. Why does this happen? It is heartbreaking.

Tuesday, February 16, 2010

Happy Day...and some extra prayers needed...










Kendall had a great day today! We were delighted to see our Vision team! Terri (teacher of the visually impaired)and Shay(orientation and mobility specialist) are amazing. Mrs. Terri bought Kendall the cutest Valentine's Day light stick. We've been playing with it all day. Kendall successfully tracked it while laying on her belly. From there she turned onto her back on her own for the first time with a purpose other than getting the heck off her belly. She actually wanted to look at the light. I tried to capture it on video, but couldn't. Instead I got the cute picture of her giving Mrs. Shay the sad face. Though Kendall does love Mrs. Shay, she is partial to those who don't make her work her body so much!! I'm thankful Mrs. Shay gets to make her mad instead of me :)
Right after that we had a visit from our ECI friends. Once again I was reminded of how blessed we are to have such compassionate people in our lives. I've mentioned before how lost I would be without them. They are so wonderful in helping me navigate through different resources. I learn something new from them every time. We're excited to begin working more with Kendall on sucking through a straw...and ECI is getting us some tools to help! (more on that later!) Lindsey (our coordinator) helped me talk through some of the upcoming things I'd like to get Kendall started in. Hippotherapy, Music Therapy, and the Listening Program to name a few. And Christy (our Speech Therapist) has a plan for Kendall's unique challenges with eating and drinking. Big things await!!!
Justin and I had an enjoyable Valentine's weekend, thanks to Nonny and Poppy. They kept Kendall so Justin and I could get out to a nice dinner. We enjoyed yummy Mexican food alone and a drink at Fred's in Ft. Worth (one of our favorite places...and where we met!) It was very nice to spend the day reading and relaxing without a screaming baby!
Speaking of that screaming baby, she is doing soooo much better. I'd say almost 100%. She woke up extra early this morning and gave me fits for the first 3 hours. Then, when our awesome nurse arrived, I happily handed her over! Kendall did a great job standing and took a great nap. She woke in great spirits, ate well, and enjoyed more standing time laughing at silly poems in her new book.
It certainly does "take a village" to raise a baby with special needs. I will never take for granted the amazing support system we have. When she turns 3, I might have a breakdown. Be prepared.
Thanks for all your prayers for my sick baby. Please keep Kendall's BFF Caleigh in your prayers too as she still remains in the hospital.
Oh, and my dad. When I didn't think it could get much worse than my mom being out of pocket with her treatments and being sick all the time...we found out my dad has some issues too. I do have older parents (my mom 38 when I was born and my daddy 40) so my hugest fear has always been their health deteriorating. Unfortunately my dad had an MRI come back showing he has Facets disease (a degenerative spinal disease.) He has an appointment with a Neurologist to discuss options. And tomorrow he is having a biopsy done of his prostate. His levels came back higher than normal, which may indicate Cancer. So please keep him in your prayers. If you talk to him, he's fine. The man has run more marathons than anyone I know. He hits the gym every day. He's the most active retired old man I've ever seen, with the biggest heart. He does so much for this family and our community. The thought of him being sick brings both my sister and I to our knees. So please send up some prayers for Big Ed.

Friday, February 12, 2010

More Snow


We ended up with like 14 inches of snow. And, is it bad to say I'm totally over it?! We've lost several trees in the back. They were my favorite ones, and they split right over. My floors and dogs have been constantly wet. Kamden's gone through a whole drawer full of clothing. I can't get warm, and I've been eating everything in sight!
This snow puts a damper on my running regime too. With the Cowtown Marathon (I'm only running the half) in just 2 weeks, I can't really miss any training runs...so I'm off to the gym to run 10 miles on the treadmill. Yuck.
Kendall still sounds pretty bad. The breathing treatments don't seem to be helping. I have a call into the Dr. to switch her from Xeoponex to Albuterol. She's been pretty weak and tight today. Hopefully she will let me put her in her stander again. She hasn't been tolerating really any physical therapy or stretching. She just wants to be cuddled. I'm just neurotic about losing ground. But I guess if I had Strep I probably wouldn't want to workout either. So maybe I should cut her a break!?
Hope everyone has a great weekend.

Thursday, February 11, 2010

Snow Day!




































Kendall made it through the night without any issues. I think the antibiotic is starting to work. She's still not running a fever and seems in good spirits. Our wonderful nurse braved the ice and snow this morning to be with us! (I was totally surprised...if I were her, I would have stayed in bed!!!) I was so happy to see her. I was able to get some grocery shopping in so we could make some cold weather food :) And she eased my mind as far as Kendall was concerned. Although she sounds pretty raspy, when she coughs it does seem to clear a bit. We will continue with the breathing treatments and pray for an uneventful few days.

When Kam got home from school he was very excited to play with the neighbor kids in the snow. We have had way more snow than I have ever seen living in Texas. When its all said and done we may have 10 inches or more tonight. Personally, I hate the snow and cold weather, but am excited the kids have had fun with it. Kendall and I will be chillin inside for the remainder of the weekend for sure.

No school tomorrow either (and no nurse!!) So wish me luck!

Wednesday, February 10, 2010

Strep


Kendall has Strep. She has been a little stuffy for a few days. Yesterday it was working its way down to her chest. Today we went to the Dr. because she was wheezing. I asked for a Strep test because her breath smelled funny. Low and behold, I was right. She was positive for Strep. She hasn't run a fever at all, and she is in really good spirits. She's even sleeping well.


So we are starting antibiotics and breathing treatments minus the steroid. Praying this does the trick and we can steer clear of the Pulmicort. We are keeping a close watch on Ketones. If they rise over 8 we will be in the ER right away. We're not messing around this time. Since she doesn't have a buffer, she can go from fine to DKA in about an hour. We were told to head straight to the hospital so more detailed Ph labs can be drawn if things get high.


So, it will be an interesting evening around here tonight. Xeoponex makes Kendall crazy and hyper. But she needs it to breathe! The antibiotic has already upset her tummy. So I don't expect her to sleep much...And I have a huge headache again. Ugh.


Please pray for Kendall as well as Caleigh. (don't think Holly's posted yet....but lets just say Caleigh is a one upper for sure...poor baby and poor mommy and daddy. When it rains it pours.)

Monday, February 8, 2010

Reading.


Kendall loves to read. When she is arching her back, or wailing in her stander, all she needs is a good book to calm her down. (ok, its not really that simple, but close)


She does love to read. I know she listens intently. I'm not sure if she sees the pictures, but she definitely can see the pages. She tries to turn the page in the book when prompted. She also laughs at the same part of Dr. Seuss books every time. So, I think there is some comprehension going on.


She mostly loves Kamden to read to her. He has the fluctuation in his voice to keep her attention. He is very patient and will sit there reading a pile of books to her while she's in her stander or on the floor.


I love that she is interacting so well socially. But I sure do wish she could entertain herself a little. It is exhausting having to stimulate her every.second.of.every.day! I just wish she could sit down on the mat and play for 5 minutes by herself! Please tell me that will happen one day!


Friday, February 5, 2010

Sunshine After the Rain

We have had a number of really gloomy days here of late. I can't stand it. I can't run in it. I can't take Kendall out for walks. I can't get my stupid dogs to use the potty outside when it's cold and rainy. I hate the rain. And I hate the cold.


Yesterday my phone pooped out and I had to head to the mall area where they could repair it. I used to hit all the large department stores and mall areas daily when I was working. Most of my accounts were in or around the best shopping centers in Dallas. Needless to say, I shopped a lot and was really up on all the latest everything. Yeah. Not so much anymore. I feel like I have no style AT ALL. I don't even know the latest tunes on the radio. Music used to get me through the day. Now the only new songs I hear are on commercials or background music while watching tivo'd The View's or Chelsea Lately's. Kendall has monopolized my radio on drives to appointments! I'm turning into a nerd.


Anyway, I had to kill time while waiting for my phone to get fixed. I stopped by the Gap to see if they had any good sales. Bad idea. I felt completely out of the times walking through there. Reminded I need to...at some point...get back to a pre-baby body. And everything in my closet is out of date. Blah. Anyhow, looking through baby clothes was even worse. I saw a super cute pair of golashes with polka dots. Then I lost it. I literally stood there and cried. My sweet Kendall can't splash around in the rain. She's almost two and can't roll over on her own. She can't wear those boots and enjoy the things most kids her age do. I don't have a job anymore and can't buy anything I want. It sucks. And its not getting any easier and that pisses me off. Bad.


But today we had some sunshine. Now I feel a little better. I hate that I still go through these types of weeks. I have a ton to be grateful for. I know that. And I get very frustrated with myself for these feelings. I also know myself well (obviously.) I know that even if Kendall were completely healthy and I had a job, I'd be complaining about not having enough "me" time or having to work harder some days and not being able to spend time with my kids. I'd probably be griping that she was getting into everything and I was always picking up toys or something. I don't know. It's all relative.


We have to play the cards we're dealt, I guess. So I will. Speaking of cards...my good friends are all in Vegas this weekend. I'm sad I couldn't be there...but hope they are safe and win lots of moola.


My friends are amazing. I love them so dearly. I couldn't get through a month without our bunco nights or girls night outs. Thank you girls for loving me even though I've been such a flaker lately!! I promise to snap out of this funk at some point :)


Wednesday, February 3, 2010

What Does Kendall Eat?




Eating for Kendall has always been a strong point. Er, up until the whole not eating thing, and g-button insertion.


Anyway, we continue to offer her foods. This isn't always easy. I have spent a small fortune on organic products, and hard to find items (coconut flour and coconut oil...to name a few of the most recent scavenger hunts I've been on!)
Some days she'll eat. Some days she fights. But I can usually get at least one 100 calorie meal down her. She's really open to all textures and tastes. Before the Ketogenic Diet we would season her foods with salsa and lemon juice! The girl loves flavor. Since starting the diet 7 months ago (yes, 7 months have passed!) she has decreased in the amount of food she'll eat and what. We used to think it was because we were hiding meds in the "egg nog" and scared her away. Now I just think she's sick of the same greasy meals. She used to eat broccoli and beef and mayo like a champ, and chicken ranch and green beans were also a favorite. Now she won't touch either one...
So I have made a few new recipes with the new ratio. She loves egg and cheese omlets (pictured above) and has a new found love of kiwi (also pictured above) AND...I just introduced her to chocolate in the form of fudge (pictured above) The eggs and kiwi are one example of a 100 calorie meal. Hidden in the eggs and cheese are cream and olive oil. The wine, of course, is for me. It is a necessary ingredient for me to keep my sanity as I spend a ridiculous amount of time measuring out a 3.5:1 fat to protein and carb ratio.
Some days I resent this stupid diet for taking so much time and being soley responsible for her losing interest in eating (and drinking completely!) Then I remind myself we are only on one daily seizure med. Her alertness and development are soaring, and she only has about one seizure cluster every 2 weeks instead of hundreds a day. So I can live with searching out approved chap stick, lotions, shampoos, and fever reducers. It does work. And it is totally worth the time and effort. And had this diet not worked, we would have tried ACTH next. It would have killed her for sure considering her last reaction to a tiny steroid with Diabetes. So this diet has saved her in more ways than one.
She had seizures late this afternoon...but they are gone now. (she's pretty predictable. the last ones were 2 weeks ago to the day.) They never get easier to watch. ugh.

Tuesday, February 2, 2010

Barnes and Noble Storytime and Craft




um, yeah. Kendall didn't like it so much. The lady was pretty expressionless, and coloring has always been a bit over-rated in my book too.




Though Kendall wasn't very impressed today, I don't regret going at all! We were delighted to see our dear friend Caleigh getting back to her old self again. (and Holly too) When we arrived, I had to laugh that we dressed the girls in the exact same dresses. How does that happen!?


Anyway, I think today is the first of many new outings for the girls. So what if they couldn't care less...play dates are for moms anyway! Everyone knows that.

There's absolutely no reason why we can't join in on all the fun normal kids have right? Who knows, maybe Kendall will learn to like her chair sitting still one day! One can dream.




After story time we picked up her new glasses. They are actually thinner than before. I guess the number is higher, but before she had a huge astigmatism and now she doesn't...something like that. She seems to be seeing out of them really well. So that's good news.

Everything else is going well. Between our nurses being sick and several of K's therapists being sick, we've made out pretty well so far. Knock on wood.

Hope you all are having a great week!