Justin's grandfather passed away on Saturday morning, so we packed everyone up and headed to Eastern Oklahoma for the funeral. Kamden's been there before with Justin, but this was the first trip for Kendall and me.
Kendall did remarkably well on the three and a half hour drive. She was perfect the whole weekend actually. Despite a few low drops in sugars, everything seems to be going great with her health. Thank goodness....seeing as there's no cell phone service in the mountains, nor is there 911 service. At first I was a nervous wreck about this, but reminded myself we always carry her emergency meds with us, and we could handle it. It took a ridiculously long time to pack, but once we tripled checked ourselves, I felt confident.
Besides being there for a funeral, we enjoyed visiting with all of Justin's family. Many of them have never met Kendall, so it was nice to introduce her to the whole entire family, and see where Poppy grew up. Kamden enjoyed himself too...getting to know his "cousins in the country" like he put it was fun. I think it was a bit of a cultural experience for him!
Nonny and Poppy arranged for us to stay in a beautiful cabin on the lake. It was very comfortable and easy to get Kendall situated there. Aunt Val and Uncle Josh also stayed there. We enjoyed spending time with them, and were thrilled to see Josh in one piece after his stay in Nigeria. Kamden and I spent the evening on Sunday watching the sunset on the dock, and talking. For me, it was nice to spend some time with my son without video games, computers, or blackberries!
We're home safely now, and gearing up for a busy week. We should start getting some test results in, and hopefully will figure out Kendall's glasses situation. She's broken her current ones AGAIN, so we're eager for the new lenses and frames to be ready. I'll keep ya posted...
Kendall is still doing great this week. She resumed all therapies again, and is making great progress.
She had OT in the pool the other day and did so well. I learned some new things to try to incorporate therapy into our fun swimming time.
On the PT front, she is doing an awesome job on all fours and reaching with one arm. She still needs some assistance, but we barely support her. She's consistently rolling from front to back, and still working on back to front....though we figured out last week if she can tuck her chin in, she can do it. Before, she would go into full extension and it was nearly impossible to help her roll. I just need to get creative and put some sort of a mirror on her chest or something! We've increased her tummy time a lot this week. Since her new g-button is SO AWESOME, it doesn't pop open and interrupt us!
At speech on Wednesday, we started some Board Maker activities that will begin to promote her use of the Proloquo2Go on the ipad. I still haven't invested in it, because I don't think she's quite there, but she's close, so it won't be long. Then, today at Speech, she chewed and swallowed one whole Ritz cracker!!! I was so proud. And she was really enjoying herself. This coming week, I am planning to eliminate one g-button feed and replace it with a whole meal. I think she's ready.
We're having a really difficult time getting Kendall's new glasses prescription. Apparently the frames we chose are not good for the thick lenses she needs, so we are needing to pick out another frame. A plastic one. It looks like we may have to go with the Miriflex frames (they are absolutely horrid) or a Pez 56 frame which is blue. I'm hoping we can figure something out early next week...because I'm very anxious for her get her new lenses and sunglasses.
So, that's about it! She's sleeping better and continues to plug right along :)
Oh, I also feel I should mention...Cook's called on Monday afternoon to follow up on my concerns. The patient advocate spread the word that we were very frustrated with the hospital's lack of knowledge on the Ketogenic Diet. They promised they are doing a training on both insulin dosage for babies (apparently it's more uncommon than we thought for little babies to be on insulin...she's two...but whatever) and the pharmacy will now keep brand name seizure meds in stock always. I was thankful they followed through.
***and yes, we have a swing in her room...it helps with the Texas heat and rainy days!
One of the hardest things for me in this journey with Kendall is balancing my time and attention between my two babies! I don't know how people do it who have more than 2 kids and one with special needs. There's a big age gap between my kids, and Kamden is definitely more independent than a child closer in age would be. So, I know it could be worse!
But I have to say my big baby Kamden (a now 4th grader) is one of the most special, talented, loving, and funny kids I've ever known. He has embraced his big brother responsibilities with such grace. We have always been straight forward with him regarding Kendall's issues, and he gets it. More than we know.
He's been very worried about Kendall this past week, and I'm sure I could have done a better job explaining things...but running all over the place trying to get her well wore my patience thin for sure.
But he's handled it well. In fact, he is such a helper with therapy and calming her when she's having a fit, that Justin and I sometimes count on Kamden for a break. And he helps without complaint.
I am so blessed to have such wonderful children. It's really amazing how your priorities are rearranged when one of your kids turns blue!!! I've been reminded to cherish every day!!!
And very happy about it! Kendall is doing so much better. She's mostly off pain medication, although we gave her some in the middle of the night because she seemed uncomfortable for some reason. Just when I think her sugars are off the charts, they test normal. And when I think for sure she's fine, they are sky high. Crazy child.
Other than being on high alert with her sugars and ketones, we were able to get a bit of rest. We have a busy day today. Kamden's been in music camp all week, and has his performance this afternoon. I'm sure Kendall will enjoy the outing.
The picture above is Kendall, my dad, and me meeting Troy Aikman in the hospital right before discharge. He was there with his daughters passing out prayer bears (Kendall already has a whole shelf full of them!) He was very sweet, and offered to take a picture with us. My dad was pretty excited...but personally, I prefer rock stars to athletes :)
So, we're happy to be back in our element. I'm always reminded that a bad day at home is still better than a good day in the hospital!
Things are going a little better today. Kendall looks so much better and sounds better too. I gave her a bath and brought her wheelchair up. That seems to have made all the difference.
Thankfully we ended up being floored instead of the ICU because her breathing was better after the treatment and steroid. Yes steroid. It was our only option. So, we're back in the game of making certain her blood sugar is controlled extra tightly. So far so good....
The anesthesiologist from yesterday came by this morning to check in and apologize. She ended up intubating Kendall with a tube that was too small and had to do it again with a bigger one. Under normal circumstances, she would have immediately given her a steroid, but because of her Diabetes and issues, she decided not to. Kendall did look and sound fine when we left yesterday. She said we definitely did the right thing by rushing back. And going forward, she will always need to go inpatient when having any surgery.
Unfortunately, this hospital experience has been pretty crappy. I just finished giving the patient advocate an earful. Again. Mostly Ketogenic Diet stuff. Like I said before, we started this diet in this hospital. I don't understand why they can't just do like a quick class explaining how serious and strict this diet needs to be for kids like Kendall. I always feel like they look at me as the "crazy mom" who's so uptight. But Kendall wouldn't be seizure free if I wasn't so, I'm not apologizing for that! And the fact they don't have her food, or insulin is just ridiculous. They should be prepared for unexpected Keto Kid stays all the time if they initiate the diet at this hospital. Oh, and no brand name seizure meeds, which of course is a no-no for kids who are as fragile with their seizures as Kendall. Especially her Keppra. I certainly don't have a problem going home and getting it, but when you haven't slept in 2 days, that's really the last thing you want to keep doing. But I did this morning, leaving my dad here alone with Kendall. Thank God my dad stayed here with us last night. An extra set of hands with Kendall in the hospital is completely necessary. So I ran home to grab a day full of formula and brand name Keppra. Also to refill on diabetic supplies. Even the basic stuff they can't seem to locate...grrrr. But as I was gone, the nurse came in to prep Kendall for a blood draw. They numbed her arm with stuff (which by the way isn't Keto approved) and my dad asked what they were doing. She said taking blood. My dad asked why and discovered she was drawing from the wrong patient. Seriously. I know we're only human. But it puts a mom in a sticky spot when she has to leave to go get things the hospital should have and isn't there to watch every move made. So wish I could be in two places at once, but I can't. So what do you do!?
Bottom line, she's going to be fine. Hopefully we will be going home soon. We learned valuable lessons again. This new button is fantastic, and her site is already looking a hundred times better. The muscle biopsy is bruised quite a bit, but she isn't in pain. We haven't given her pain meeds since last night, so I think she's doing fine.
Thanks for all the prayers, e-mails, texts, and phone calls to let us know you're thinking about us :)
So True to Kendall form...she's taking us for a ride.
We had the muscle biopsy, cauterization of her granulation tissue completed, the new button...a mini one non balloon, thank you very much, and her examination under anesthesia. Her pressures were high in her right eye, 38, and normal to high in her left. Her eyes are growing but her corneas are thick and may be the reason for the higher pressure? But that's the least of our concern!
We came home and Kendall turned blue from not being able to breathe. It was the most scared I have ever been with her. It was a no brainer to come back to the hospital. Of course we were taken immediately back, given a racemic epi and a steriod through her gbutton. Apparently she may just have that reaction to breathing tubes. The last time she had surgery she had the same thing. So were back in the er and I am using kendalls iPad to update! We are being admitted, not sure if we will be on the floor or the ICU. It just sucks. Again. I'm exhausted and will try to be more specific in later posts.
Thank you all for your prayers and encouragement. I will keep everyone posted through the blog. She is just the sweetest little angel in the world. Poor child woke up this morning with a grin on her face, and now she just looks miserable :(
Oh, and that muscle biopsy scar is really 3 inches long...
We just returned from a 2 and a half hour pre-op for Kendall. She was a little angel through the whole thing. It was interesting to me how she woke up in such a great mood...all chatty, lovey, and smiley... then as soon as we stepped foot in that hospital, her mood changed. She became guarded and cautious. Eyeballing everyone who came her direction. She knew where she was and why.
I've been trying harder to talk to Kendall about things that are happening. Our nurse, Angie, does a fantastic job modeling this for me. She tells Kendall everything she's going to do and why. And boy, does Kendall listen! Unfortunately, I am sometimes guilty of just whisking her away, grabbing her hands to do sugar checks, change diapers, set up feeds, etc..
But we've been talking about the procedure tomorrow. She knows what's coming. The anesthesiologist came in and in not so many words was trying to ask if Kendall interacted. He kinda stumbled with his words when asking, so I helped him out. Is there a light on in her brain?! Well, yes, there most certainly is! We've gone back and forth on whether or not to give her a pre-anesthesia drink. You know, the one they take while in the room to calm their nerves before they are sent away with the strangers. At first we said yes, then no, and now I think its yes again. I think we should all continue to treat Kendall the way we would any other 2 year old. She has emotions and fears, she just can't voice them.
There was a lot of talk about the "uniqueness" of the Ketogenic Diet and being Diabetic. We've heard it all many times before. But with surgery, it gets even more complicated. If her sugar drops during surgery because she's been NPO for so long, they normally give a glucose drip through the IV, but then we blow ketosis. Again, its going to be a balancing act...and I feel pretty confident our friends at Cook's know her well enough to stay on top of it. They may have to call our Endocrinologist a few times, but he's the greatest...so I think she'll be OK.
This will be her 6th time to be under, so I shouldn't be worried...but I really, really am. I have had a ton of anxiety about this particular time. There are just so many factors to consider. And then of course, waiting for the results of the muscle biopsy. But I'm putting it in God's hands now. So, if you think about it, say a prayer for my baby girl tomorrow morning please.
This week has been insanely busy. We had a lot of appointments, and on top of that, Kamden developed a really bad case of swimmer's ear. Unfortunately, that lead to sleepless nights. Poor baby. He was actually moaning in his sleep when he was sleeping... On Wednesday he just laid on the couch for 5 hours watching t.v. and not wanting to move.
Justin was out of town, so the evenings have been all my responsibility. Handling Kendall's stuff and trying to stay on top of Kamden's pain and medication was challenging. Kendall has had 2 three hour crying fits this week before bedtime. When she gets in that mode, the only thing you can do is hold her. Even holding her sometimes doesn't quiet her down. At one point I put her in her chair and called Daddy to talk some sense into her. And I swear, she actually stopped crying and looked at the phone the whole time he was talking to her! When he hung up I could tell because she cried again. I kept calling him back until I realized he was trying to navigate through LA and his only form of GPS was on his phone! oops.
But we made it through. All I can say, is thank goodness for nursing! I absolutely,positively do not know how people do this without extra help. I only have 2 arms and I'm not getting any younger. I have no idea what was wrong with her. I guess it could be seizure related, or tummy related, or sleep related, or my favorite, just neurological. Whatever, sometimes the guessing is exhausting too.
Today Kamden and I are taking Kendall to speech, then across town to pick up her new AFO's. These are to be worn more than her current ones, so we will see how that goes.
This weekend Kendall and I are on our own again...so hopefully it will be uneventful!
I am finally sitting down to blog. It has been a very busy week. My 3rd grader is now a 4th grader (sniff sniff) and we celebrated the end of school with our 4th annual end of the year pool party. The kids had a blast and played their hearts out. Then, we had a few friends over along with their kids, and continued the party. I'm exhausted and sunburned today, and very much looking forward to a good night sleep.
I haven't seen any seizures in Kendall during the night at all. But, as predicted, our Dr. has increased her morning Keppra dose to 3ml's and scheduled a 24 hour EEG later in the month. Hopefully everything will be all clear and we can continue doing what we're doing.
She's been sleeping so much better lately. And we are making more great progress in Speech. We followed in Holly's footsteps and got Kendall an iPad. (Thank you Nonny and Poppy for your generosity!) Caleigh has been doing such amazing things communicating with her's, that we were inspired to follow suit. I will explain our approach in a later post. I am still in the throws of programming it to have all of Kendall's items and get them in a format that she is able to touch. We have also begun prompting her more with vowel sounds. After one time through the "famous" Monkey Mouths flash cards (I know they're called something specific...but it's slipped my mind) Kendall is repeating vowel sounds after us. She's also sucking a straw, and eating pretty much every texture. Yes, that includes liquids :) So, huge improvement there. This Wednesday we are meeting with the AAC specialist, and adding her to our weekly routine. It will be a challenge this summer motivating Kamden to attend Kendall's therapies, but I'm sure some bribery will do the trick. It'll all work out...because it has to!
We had a neurologist tell us early on not to get to wrapped up in therapies to the point our family suffers. Honestly, I understand where he's coming from, and maybe we will eventually reach a point where it evens out, but right now I do have the energy, the means, and the motivation to continue pushing forward and seeking out the best possible treatments. I know the first 3 years of any child's life are critical in development, so as I would with a "normal" 2 year old, we will do whatever it takes to help her reach her fullest potential. This is my job.
We had a great weekend. Justin and I were able to have some adult time on the lake with our friends on Saturday, since Kendall stayed with her Nonny and Poppy, and Kam had a sleepover and went to Six Flags with a friend.
The rest of the time we spent enjoying our family, and getting Kendall used to the water again. Needless to say, she definitely has the fish gene everyone in my family has! She loves the water. Yesterday we pulled out the trusty neck ring and she went after it again!
We're looking forward to starting water therapy with her next week. Our incredible PT is going to check out the layout of our pool this Thursday and then get her in the water on Monday. I think she'll be impressed with the way Kendall can move in the water!
Kendall and I have also been enjoying our morning walk each morning before it gets too hot. She's taken an interest in the ducks on the golf course. We bring bread and feed them each time we pass by. We've found a nice shaded spot and Kendall will talk and talk and talk to those ducks! I had a small panic attack this morning when her arm was out and a curious duck (a BIG one) thought she had some food and got a little too close! But it is definitely something I look forward to each morning!
So, although we had a wonderful weekend, and are welcoming the Texas heat with open arms (sarcasm) it all came to a screeching halt when Kendall had a seizure Saturday night. She was with Nonny, and fast asleep on her back. But those old familiar jerks and spasms returned. When I heard, I almost passed out. I can't explain the feeling of disappointment that ran through my body. I've come up with every excuse for them to be anything other than seizure activity...but my gut tells me it was a seizure. We have a call into the Dr. to find out the plan. I'm guessing either an increase in Keppra (she has had some weight gain) or another 24 hour EEG, or my Dr. will just say....hmh. And not do anything at all. I think seizures are a bigger deal to me than they are to him. But it is pretty catastrophic to a parent to see the seizure monster return when he's been away for over 4 months. I pray they aren't back for good.
We are very open about our journey with Kendall. We're happy to answer any questions, and welcome all your comments! The one thing we don't want is to be isolated from our friends and family. I've been that person who thinks it is easier to just ignore a child with special needs and their family. I've feared hearing their story. I've been guilty of looking through a child with special needs. I've also thought and said "how on earth do you deal everyday?" Although it certainly isn't easy, we are a normal family...celebrating all the milestones our daughter hits (and maybe cheering a little louder in the process!) Let me tell you...it's been a long road with many bumps but the love and support we receive daily is what keeps us truckin'! Click here for the full story on our precious baby girl Kendall Ann, or scroll down for the quick recap! Thanks for visiting!
more music please!
clearly before keto diet and diabetes
Kendall Ann has blessed our lives in so many ways. She is truly a gift from God and has proven herself to be a fighter from the beginning. She was born with many neurological and optical abnormalities, which we now know is due to a stroke in utero...probably due to her Factor V Leiden mutation and two copies of the MTHFR gene (1-14-09).Oh, and NOW she has Type 1 Diabetes (8-19-09) And NOW (12-16-10) she has problems with her Mitochondria ... and NOW (2-11-13) a neurogenic bladder resulting in a vesicostomy. Of course there is apossibility of a Mitochondrial Disorder, and a possibility CDLK5 caused all the problems and Mito secondary...but we will never know, because we've decided no more testing! When she was born she came right home...no NICU stay...and we had no idea anything was wrong! She has undergone numerous hospital stays and a number of surgeries, but through it all, she has maintained a smile that wins the hearts of everyone who meets her. Please join us in our journey of life with a special little girl full of spunk and personality who happens to have multiple disabilities.
I like to say I'm a party- girl-turned-career-girl-turned-stay-at-home-mom to a son who's gifted and talented, and a daughter with special needs. My hubby levels me out, and I'm a lucky girl to have found him.(I kissed a lot of frogs!)
I love my life and all it's chaos. My family and close knit group of friends help me get through every day! I'm getting better accepting that God's plan isn't always my plan...and alcohol sometimes helps :)