Home

We made it home around 3 yesterday. It took a while to unpack all our new equipment, but I did and feel pretty organized now.

Yesterday morning early Kendall's blood sugar dropped pretty low. We were forced to give her Apple Juice (not an easy task since she wasn't eating well) After the same scare twice, we changed her Lantus back down to one unit. When we came home my head was spinning.

Kendall's demeanor immediately changed when we arrived home. She drank a whole bottle and went back to sleep. She's been fussy, but nothing like in the hospital. We've seen some smiles and improved head control.

I have myself so worked up that I can't leave Kendall for a minute without watching her. That seizure traumatized me. I'm terrified that if I'm not watching her and find her unconscious, I won't know if its a blood sugar thing or a seizure thing. Do I administer the Diastat, or the Glucogon? Will I be able to keep calm long enough to figure it out? Let's pray so.

We had a delightful nurse come by our house and do our evaluation. I'm still waiting to find out how many extra nursing hours we will be able to get. Right now they pay for 3 visits a week. There is a possibility we can get up to 70 Respite Nursing hours a week since Kendall can't go to Daycare, etc... And while I think this nurse could potentially be great, it would take me a long time to trust anyone. But it would be nice to be able to leave her with someone who is qualified to deal with all her medical stuff while I go to the grocery store, do stuff with Kamden, have a date with my husband, or go running. I'm not convinced I would be OK leaving it up to someone else to work with her and be responsible for all her therapies, etc, but the extra help would be great.

Today it seems like Kendall and I are in recovery mode. I am physically and emotionally spent. I think she is too. So, we will rest today and try to get back to normal tomorrow. Speaking of normal...the nurse last night told me "the only thing that's normal is the setting on the dryer."

Thanks again for all your prayers and support. Every time I check my phone or get on the computer, I am reminded how lucky I am. My family and friends are the best.

Friday Night

Kendall did better today. We should be going home tomorrow. Our Endo. said he is fine sending us home not 100% because he believes its easier to get better at home. I love him. He is a great Dr.

Speaking of great Dr.'s...this week at Cooks we have met plenty. Our stay was as good as it could have been given our circumstances. The nurses both during the day and through the night have been great. (and trust me, I'm the first to say when they aren't.) Even the NP who I haven't exactly gotten along with in the past went above and beyond today. She actually hugged both Justin and I when she left this evening and told us to hang in there and that we were doing a great job. So I guess I have to give her a second chance too!

While there were good Dr's there was one who left me completely dumb-founded. She was the pediatrician (I guess) on staff at the hospital. She was young and nice enough, but she recommended Justin and I take Kendall to a Palliative Care Dr. (in case you don't know what that is, its like a Hospice Dr...yeah.) I just kind of looked at her as the blood rushed away from my head and calmly said "uh, yeah, I know what it is, and um, no." We are so not there yet. At all. And while her intentions were good I'm sure, I felt like punching her. So, no, we will not be adding a Palliative Care Dr. to our list. I don't have time for any more appointments anyway!!!!

The Home Health agency will be meeting us at our home tomorrow (assuming we get to go home tomorrow.) I have loads of things to do and I'm sure the day will be stressful, but we'll figure it out.

Oh, and also, I have to say that my husband is an amazing man. Even though he doesn't wake up in the middle of the night or the morning as well as I do, he's the best. He has taken this whole week in stride. Remaining calm and as always the voice of reason. He's holding our precious baby girl in the rocker right now and she seems pretty content (knock on wood) Kendall is lucky to have such a loving, devoted father who stands strong even amidst the toughest situations. He's made up the best songs and read Dr. Seuss books to her at least a hundred times this week.

We are blessed.

Update

So yesterday Kendall cried until about 8:00pm. She took a few cat naps in between, but all in all, she was awake screaming most of the day. She also started vomiting last night. She doesn't have a voice at all anymore.

She blew another IV (that totals 4) and it was next to impossible to find another vein. But they did.

The nurses here are truly special people. They seem to care. Really care. Our child life specialists took Kendall around in the wagon while Justin and I took a break last night for about 30 minutes. Then, I think it became more evident to all the nurses what we were dealing with. They were persistent in telling the Dr.'s so last night a very low dose of Klonnadine (sp?) was called in. I guess this is a drug used to treat high blood pressure as well as anxiety in adults, but it worked. She slept for a few hours, woke up fussy, then went back to sleep. So, baby steps towards getting her some rest. I'll take it.

The search was still on for finding a reason for her fussiness. (apparently constant screaming for 4 days and no sleep isn't normal) They wanted to test for a UTI by catheter yesterday, and I said no. I test her urine quite frequently with test strips at home, and everything looked fine. But, when we couldn't find a reason, Justin and I talked about it and I reluctantly agreed to rule it out and have the test run. Looks like everything was normal, but we're still waiting for another test result from the culture.

I requested our Ophthalmologist come take a look at her. Kids with cataracts removed are at an increased risk of Glaucoma, and I've read when Glaucoma develops there are symptoms such as increased fussiness and watery eyes...all of which she has, so I'm going with my gut on this one.

But I believe this is a sensory thing. She's just over stimulated and overly exhausted. She drank 1.5 oz this morning, and she's starting to take her passy again.

We've adjusted her Lantus again since she had low blood sugar in the middle of the night. Yesterday we only had to give her one dose of Humalog, so they are still playing with that. So, on average her Ketones are running at 6.5 or higher, and her blood sugar has fluctuated from 285 down to 60...like we said before, she's complicated!!!

On a lighter note...Justin didn't have anything to sleep in, so I offered a pair of my PJ pants...Leave it to my hubby for the comic relief. My 6 foot 5 handsome, muscles of steel, husband put on some cute pink flowered stretchy capri pj pants. They were skin tight and I laughed til my tummy hurt.

Its hard to think clearly in here. My brain feels like mush, and I can hardly tell you what day it it, or what time it is. I don't know how you moms make it through long hospital stays. I'm a mess! I can't remember what Drs or nurses I've said what to! And the florescent lights are killer. I want to be home, but only when Kendall is ready.

Looks like the nursing is being figured out too, so that puts my mind at ease a little.

Thanks for the prayers. Please keep them coming.

****************Update**************************
Kendall's results came in and her Diabetes is Type 1 Auto Immune (whatever that means...I guess that it just happens) Good thing is it is just another issue. We will not be moving forward with a muscle biopsy.

As far as I'm concerned...she had a stroke in utero caused by the Factor V affecting the formation of her eyes resulting in cataracts leaving cysts in her brain which caused Infantile Spasms, which have nothing to do with the other issue uncovered this week...Diabetes...

Justin says we need to get a bumper sitcker for her wheelchair that says "Shit Happens" I thought that was tacky at first, now I think I'll go get one!!!

No Sleep

Kendall hasn't slept in 48 hours. She sits there crying non-stop with her eyes wide open.

We looked at starting Melatonin, but decided against it.

I think she doesn't like the hospital, and since she's not feeling well she wants us to know it.

I thought eventually she's poop out and crash, but that hasn't happened yet.

Nonny held her all day yesterday until late. Justin and I tag teamed throughout the night. We had a nurse come in and rock her for 2 hours. I can't sleep when my baby isn't. There's no way around that.

We ruled a bunch of things out: she doesn't have RSV, no pneumonia, no ear infection, no flu, no swine flu, no fevers, the tummy x-ray came back normal, her heart sounds good, her blood sugar is starting to even out. Why won't she settle down? I thought their heavy duty rescue med would have knocked her out. This sucks. She won't eat from her bottle and we are force feeding her her solid food.

We saw the nurse practitioner today who mentioned the g-button before. She may have gotten wind that upset me. She didn't mention it today, and today it would have made sense for her to mention it. I would have handled it better. She needs to eat.

I believe once we are in our home and she's feeling better, she'll eat. I pray.

The head of the Endocrinology department is now officially our Dr. We like him. He's calmed my nerves. He thinks this is do-able. We've increased her Lantus in the morning, hoping this will minimize the corrections during the day. Kendall's acceptable Ketone levels should ideally be around 5. They have been fluctuating between 5.8-6.5. But we're getting closer. Her blood sugars are getting closer to the acceptable range. So, giving more insulin to correct the ketones would be a bad idea. We're hoping it will even out soon. Then we can go home. And Kendall can eat.

Thanks to all you guys for your calls, e-mails, and visits. We're all dragging today. And praying for Kendall to eat and sleep....

Not good.

Kendall cried a lot last night. Nobody could figure out what was wrong. I tried to sleep but couldn't so spent the majority of the night holding her and trying to make her stop. It never worked.

The last thing I remember is the Respiratory Therapist coming in around 4:30, then shift change. I must have finally passed out to the sound of Kendall breathing. The next thing I knew, she was making a really weird noise. I went to the bathroom to brush my teeth and then was going to tend to her.

I went to brush my teeth. I was BRUSHING MY TEETH while my daughter had the worst, Tonic Clonic seizure I have ever seen EVER. It lasted...brace yourself. An hour and 15 minutes.

The med they were going to put into her IV was quickly ordered. Then they discovered she had blown her IV. They couldn't find another place to put another one. Two others were called in, then in the mean time they administered the Diastat. Twice.

Then the chaplain, IV team, every available nurse entered the room. A crash cart was ordered, and I shut down. All I could manage to do was pray.

It finally stopped.

Justin's here now.

She's finally awake and smiling.

The chest x-ray came back normal, but I think she may have another ear infection.

Back on Klonnopin we go, and we will continue the Ketogenic Diet.

The head of the Endo department came in and explained his experience (THE ONLY ONE IN THE US) with Ketogenic Diet and Diabetes. It finally became clear to me how we are going to manage this. We will measure her Glucose in her blood on the same meter as her blood sugar. Our acceptable numbers are quite different from a usual diabetic.

He also is on the Mitochondrial Disease band wagon. But we are treating things as they arise. One day at a time. Her lactic acid levels are OK...right now.

The Epileptologist on call mentioned Kendall's retractable seizures are the most complex to control. He also again mentioned surgery could be a course of action still (he's new,and young, and optimistic) Apparently our expectations for Kendall to be seizure free are a long stretch. I refuse to lose hope. She's a fighter and we are too. We will get through this.

I was assured that the Neurology and Endocrinology teams at Cooks play well with each other in the sandbox, and share their toys. Time will tell.

Please pray nursing is approved by my insurance. Though my attitude may change in the next few days when things still sink in and I have had some sleep, it is going to be tough.

We aren't going home any time soon.

Another Night

Last night and yesterday were pretty rough.

Since I didn't sleep a wink Sunday night, my head was spinning all day Monday. There's so much information and so much to do. I was stressed out before, but now with the added burden of diabetes and all that entails, I'm on overload. I became extremely frustrated with the diabetic educator since none of the information she was giving us pertained to Kendall. (for instance normally if blood sugar gets below 80, you give juice, but with Kendall on the Ketodiet, its 60) She didn't have any good answers for us. She finally madethe decision to meet with the Dr.s and come back tomorrow. Complete waste of time.

After a very traumatic blood draw, my mom and I had to leave the room or else we were going to hurt someone. They ran out of places to draw blood. They were looking for a vein in her HEAD.

Because of the extended period of time she was screaming, she of course developed a runny nose and sore throat. We haven't been able to get her to eat a bottle since we've been here and she started to sound very raspy. 3 breathing treatments later, she still looks like she's struggling to breathe. It is slowly making its way down to her chest. Needless to say, not much sleep again last night. She will be receiving a chest x-ray today.

Today we should hear from the Metabolic Geneticist. I have a laundry list of questions for her. Apparently performing the muscle biopsy is a familydecision. Justin would like to know, Im not so sure. I broke down a few times yesterday. I guess I feel like we are coming to a new crossroad with Kendall. I spend so much of my time and energy just hoping and praying and working on seeing some (any) development. I often thought about how lucky we were none of her issues would get worse and she wouldn't lose skills she was able to master. Now I feel like we may be heading in a new direction. I took for granted that her organs would continue to work properly. I feel like I'm reaching a new place. A place where we need to just take one day at a time and celebrate every moment we have with her. I've been angry with myself for not doing that sooner.
She is so precious to us.

Big thanks to my friends and family. Theresa was here last night wheneveryone else went home and she was able to pull me out of my funk. My amazing friends are preparing dinner for Justin and Kamden throughout theweek. My sister has been great handling work issues for me too. Apparently some people just don't respect family medical leave and if I had to talk to them it wouldn't have been pretty. My work phone is also my regular phone and I had one guy call 6 times in a row. Seriously?! My parents have spent countless hours here with us and Im so grateful. Justin wont be going in to work today so at least some relief is in my near future. Kendall won't stop crying unless she's being held.

Please continue to keep us in your prayers.

Update

Last night was a beating. No sleep whatsoever. Kendall also has ginormous mesquito bites all over her arms and neck which I'm sure aren't helping the situation. She received Insulin injections on the hour every hour. Her blood sugar has come down, she is stable, and is allowed to remain on our current floor instead of the ICU.

Apparently when we arrived she was already in diabetic ketoacidosis. No telling how long she's been that way. On the bright side, we caught it. Results could have been disasterous if we didn't. Of course, I'm irritated that te Dr. on call last Wednseday didn't tell us to come in. Hind sight.

The endocrinologist called me late last night to let me know the labs came back very surprising to him. Her CO2 levels were extremely low. It seems that metabolic acidosis combined with high blood sugar is significant with Type 1 Diabetes. She's obviously lacking Insulin. So we'll be dealing with that for the rest of her life.

Today of course the "diabetes educator" will be here to train me on even more things I never wanted to know learn how to do. Seriously, I have quite a few friends who are nurses or in a relative field...I NEVER had any desire to do anything of the sort. Ugh. They gave me a pre-test. I put "i don't know" as most of my answers because my brain hurts from information overload already. Again. I.dont.want.to.do.this. But I guess I need to put my big girl pants on and deal with it. So I will.

Right now I'm masking exhaustion with multiple cups of coffee. (I gave up caffeine a week ago, but desperate times call for desperate measures.) So we march on.

Still praying Mitochondrial Diseas is not the culprit. I'd like to think we just have Diabetes in addition to everything else. The thought of her organs shutting down makes me want to vomit.

Thanks for everyone's well wishes and words of encouragement. As always, I don't know what I'd do without my friends and family.

Admitted to Hospital

Well, it happened. She had a seizure. A real doozie.

We gave her Clozanapam...the first time to administer a rescue med. It happened this morning. Justin was playing with her. I panicked. After crying in the closet for a good 10 minutes, I pulled it together and we checked her blood sugar. It was 305, so I called the Neurologist. They said to come in right away.

We've been admitted. She still has high blood sugar but seems to be doing well. We have a new Dr. now. An endocrinologist. Type I diabetes or II added to the list. It will be complex to control due to the Ketogenic diet. Neurology used to trump Ophthalmology, and Hematology. Now Endocrinology takes the cake.

We will be here for a minimum of 3 days. They are all looking into finding an underlying cause again. We will be seeing a Metabolic Geneticist. (we have a regular geneticist and have already had a ton of metabolic tests done.) They are now on a new search for a reason.

Mitochondrial Disease was mentioned...not good.

Please keep us in your prayers. Oh, and Kamden too, as Justin will be responsible for initiating his first week of 3rd grade. (most of you moms know that week is a bit chaotic at home!!)

Here we go again.

The Good Wife

Well, I'm officially out on unpaid Family Medical Leave for an undetermined amount of time. I will be out until and if I find acceptable care for Kendall. If that doesn't happen, I will be home permanently. Things were out of control crazy, and as I said before, being there with Kendall is the most important thing to me.

So, I'm now a stay at home mom. Cooking dinners for my family every night, cleaning my house (on my own!) managing Kendall's care, getting Kamden to school and home every day...and I've never felt happier or more at peace with a decision in my life.

Things are going to be tight financially, but we'll make do. Long gone are my days of pedicures, personal training, and shoe shopping. But I don't have time to do those things anyway. Maybe I will be successful in getting Kendall on a decent nap schedule between therapies so I can start sorting through all the unorganized closets in our house! That's first on my list.

In the mean time, thanks to my friend Aileen, I have this excerpt from The Good Wife to help guide me on this new journey...

Have dinner ready. Plan ahead, even the night before, to have a delicious meal ready on time for his return. This is a way of letting him know that you have be thinking about him and are concerned about his needs. Most men are hungry when they get home and the prospect of a good meal is part of the warm welcome needed. Prepare yourself. Take 15 minutes to rest so you'll be refreshed when he arrives. Touch up your make-up, put a ribbon in your hair and be fresh-looking. He has just been with a lot of work-weary people. Be a little gay and a little more interesting for him. His boring day may need a lift and one of your duties is to provide it. Clear away the clutter. Make one last trip through the main part of the house just before your husband arrives. Run a dustcloth over the tables. During the cooler months of the year you should prepare and light a fire for him to unwind by. Your husband will feel he has reached a haven of rest and order, and it will give you a lift too. After all, catering to his comfort will provide you with immense personal satisfaction. Minimize all noise. At the time of his arrival, eliminate all noise of the washer, dryer or vacuum. Encourage the children to be quiet. Be happy to see him. Greet him with a warm smile and show sincerity in your desire to please him. Listen to him. You may have a dozen important things to tell him, but the moment of his arrival is not the time. Let him talk first - remember, his topics of conversation are more important than yours. Don't greet him with complaints and problems. Don't complain if he's late for dinner or even if he stays out all night. Count this as minor compared to what he might have gone through at work. Make him comfortable. Have him lean back in a comfortable chair or lie him down in the bedroom. Have a cool or warm drink ready for him. Arrange his pillow and offer to take off his shoes. Speak in a low, soothing and pleasant voice. Don't ask him questions about his actions or question his judgment or integrity. Remember, he is the master of the house and as such will always exercise his will with fairness and truthfulness. You have no right to question him. A good wife always knows her place.

RIGHT.

Glucose Question

Do any of you moms out there who have experience with the Ketogenic Diet know anything about HIGH glucose levels?

Kendall was extremely lethargic today (is our 6th week on the diet, so we now only check glucose when she looks like something could be wrong.) I checked it a while ago fully expecting it to be low, but instead it was 260! Justin and I checked with the same glucometer our own and we were normal, I repeated this on three different ones and hers was consistently way above 200.

I called the Dr, and the one on call said he would make a note to our Dr to check it in a blood test tomorrow. He didn't seem too concerned stating thats not usually a concern with Keto kids.

In an effort to not sit around wondering and worrying all night, I thought I'd reach out to you all ask for any knowledge you may have on it being HIGH. Really high!

Thanks.

Lesson Learned

Um, so the picture above is now positioned nicely across the street in front of our house. On BOTH sides of the curve in the road so as not to be missed!

If I were driving down a road and saw that sign, I would more than likely look at the sign instead of the road. I would also wonder what the heck it means! Do you know what it means? Probably not.

Let me explain.

Rewind several years ago when Justin and I bought our house. It was exactly what we wanted. We knew instantly it needed to be ours when I saw it online. I drove past it the next day, perplexed because there was no sign in the yard (apparently the owner didn't want anyone to know he was leaving town...) I immediately decided I didn't like it when I saw that it was behind an old school on the curve of a road. There was an old field house directly in front of it. I scratched it off our list. My brother in law insisted we take a look at it...and when we went inside we loved it. Its a large lot positioned so that we have privacy on all sides (much different from the house Kam and I lived in!) Most of our windows have great views of big trees and our backyard. Our front two windows are my office and formal dining room. I figured we could just close the blinds to the front of our house if we didn't want to view the soon-to-be construction zone of yet another new school in our town. So we bought it for a fair price.

The past year and a half they have completely torn down the field house, built an enormous school, and created a huge track/athletic center/shot put/whatever else center! We suffered through the dust and grime awaiting the beautiful new fence giving us a nice view of a pretty grassy area...Then, despite much push back from our neighborhood association they made an entrance to the school on our street. Since we live on a curve, and the speed limit is 30, cars FLY past. (teenagers mostly...whom I yell at regularly.)

So as a last ditch effort to get the speed limit lowered and a school zone placed (they didn't want to do it because technically the entrance is only a fire entrance and people are not to drive through! yeah, right) So I called the city. I got the same old song and dance about not lowering speed limits, etc. Then I did it. I shamelessly played the "Special Needs" card. I said I have a daughter with special needs, who uses a wheelchair, and while she's never playing in the front yard alone, you never know. That sure shut them up (or so I thought) They immediately assured me they would place a sign that would suggest children at play and a 20mph speed limit all the time.

Little did I know it was going to be accompanied by two huge yellow bubble-but signs that mean nothing to passers by.

Like I said...lesson learned.

My little "bubble butt" is doing well. She's still seizure free. She had a rough day yesterday eating, but today she did much better. I had to make her stop eating the egg nog ice cream this afternoon. Boy, was she not happy. Like mother like daughter. I don't like when ice cream's gone either!

Home Sweet Home

We arrived home today. The flight was great, but security leaving Florida was a beating. The security guard wanding Kendall asked me "what's wrong with her?" I said "I'm sorry?" and she replied..."did she have an accident or something?" I was like, oh, no, did she have another diaper blowout...that would be just our luck right before we got on the plane! But, no, this security worker simply wanted to know why Kendall looked like she was sleeping, was in full extension, and strapped in a chair! (gosh, I almost forgot I had a special needs child...thankfully she was there to remind me) I could have taken this opportunity to enlighten her on childhood strokes, cataracts, seizures, etc...but I decided to ignore her. Technically, I was still on vacation.

It did take me a few days of sitting on the beach watching the children her age run and play to stop feeling sorry for myself. It still wears on my nerves when others make comments about how tired she is. She's awake people. Good gosh, her freaking eyes look 4 times their size in her glasses, can't you see that??!?!?! And if my child was asleep, do you think I would be dragging her around trying to take her picture, get her in the pool or the ocean? Probably not. She's awake. Oh, and when her mouth is opening and closing and she's turning her head over and over to the side, she's not yawning! And people should also teach their kids not to stare. Its annoying too. Fortunately to make up for the ignorant people, there are those who comment on her cute clothes, gorgeous lips, or just smile at us! And there was also the nice man on the plane who went out of his way to ask if he could help us unload. (my guess is those people are either a relative or friend of a child with special needs, a therapist, or a pastor!) OK OK OK...enough loathing in my self pity....so I'm still a little bitter.

Anyway, we're happy to be home. The vacation was wonderful and relaxing, but its nice to be home with familiar surroundings and equipment! Unfortunately, I was slapped in the face when I walked in my office to an absolutely insane calendar next week. Seriously, there isn't enough time in the day. I'm still working on finding a nanny for Kendall during the day, and before we left, I was in the throws of switching pretty much every therapist we have and adding additional therapy each week. Currently Kendall gets about 6-7 hours of therapy every week, but it looks like that may be stepped up to 8-10. Wish me luck.

Kendall is finishing up day #13 being seizure free. It still seems like a dream. Her eyes are already straightening out. She's rolling consistently from her tummy to back, and we are elated. Keep the prayers coming!

Vacation...sort of!!

I definitely need to start out by saying Kendall is still seizure free. Not. One. Seizure.



We made it. Our Internet is kinda slow...or its just my computer! I have been going through blog/e-mail withdrawl! Ok, not so much work e-mail, but definitely personal e-mail!

I've tried to post this a bunch of times! In fact I've written several blogs that wouldn't save.



We made it here without any major issues. Security was a breeze. The flight was great. Kendall did great...so did Aunt Kristin. "Aunt Tissy" held Kendall almost the whole flight. When we arrived at our beautiful place, we found it even better than we expected. We only encountered 2 road blocks. The first was on Saturday morning, when I received a call that there was a "catastrophe" with work...(that is TOTAL scarcasm) As I frantically tried to find out what went wrong, I walked past the calendar in my office and realized oh, I am so not getting paid for this today. This is totally not my problem...ha! But of course I proceeded to figure it out. Nothing like working for free. The second issue was when I started to make Kendall's formula and food and realized I didn't have my digital scale. A BIG PROBLEM!! To make a long story short, I found one and everything is OK now. But I was worried. BIG.





Anyway so Kendall is still seizure free and we are also on the second drop in her Vigabatrin. She is showing her personality more and more without all the medication clouding it. She's also asserting her dislikes more and more which can definitley wear on your nerves. But I wouldn't trade that for anything.



We have a ton of pictures already. I can't wait to share. I will post them when I get home on my regular computer and it won't take 10 years to upload!



On my way out on Saturday I somehow was "blog surfing" and stumbled upon this awesome post. When I get home I will be able to track back and give credit where credit is due, but since my Internet sucks, I can't right now. I did cut and paste it so I could read it offline. I think this is so awesome. So, I will leave you with it: (#1 and #4 are my favorites!) Please know I have awesome friends, and if I could add one, it would be to not forget that the said Special Needs Mom is still the same girls she used to be! (maybe not singing on stage to the B52's at Dallas Cowboy's after-parties as much as before...but still the same girl with the same spirit...so we don't always have to talk about the special needs child!!)




Top 5 Things Your Friend Who Has a Special Needs Child Wants to Tell You
I never realized what these parents go through until I witnessed it first hand (sort of) when I was reconnected with a friend from college. Her son suffers from a devastating seizure disorder (Infantile Spasms)and it really opened my eyes to what they are going through.


As I began to pray for her little boy who is only a week younger than my own child, God began to show me how to be a friend to her even though we are separated by over 1,000 miles. I am not saying that I am a great friend but I want to share with you a few things I think has helped me be a better friend to her.


So here is #1…
Do your own research but don’t email your friend the 1 million websites that you find concerning her child’s disorder BECAUSE unless she doesn’t have the Internet she has already looked at every single one of them over the course of 5 sleepless days and nights following the diagnosis.
The reason why I say this is because you need to be informed. This is the closest you will get to understanding what your friend is going through and you need to be equipped to help her explain to others what is going on. Your friend has to explain what is wrong with her child more times a day than you have to pee and she probably is to the point that she just wishes she could put it on a brochure and hand it out to all the inconsiderate poops in the world who stare and make faces and ask dumb questions. She needs you to already “get it”. She needs you to be able to sit in the room with her child while she eats her dinner or returns phone calls from the doctors and know that her child is safe with you because you know what is going on and how to help her child if they need it.


#2…
She needs you to shut up! or BE quiet! whichever you prefer. I am not really partial to either word so its your choice. There are so many different SN children but unless your child has the IDENTICAL disorder, DO NOT say “oh I know how you feel.” CUZ’ you don’t! you don’t have a clue and no matter how much time you spend with the child and your friend you still did not give birth to a child that has a special need and you don’t know how they feel. I will give you an example from my own life that may seem a little extreme but I think you will get the point.When I was 6, my sister who was 8, died from complications of juvenile diabetes. About 4 months after her passing it was Fall and kids were going back to school. A friend of my mom’s stopped by our house one afternoon whose daughter had just left for college and it was about 20 hours away from where we lived. She sat at our kitchen table blubbering and babbling about her little girl being so far away and then
She said it
yep, you guessed it
she said, “OH [my mother's name],I now know exactly how you feel about [my sister's name]! I feel the same way!I miss my baby girl so much!”….well, my lowly, meek and mild mother lost it, probably one of three times in my life I ever saw her that upset. She responded back to her, “You don’t have a clue how I feel, your daughter will come home for Christmas, you will get to see your daughter walk down the aisle one day, you will celebrate another birthday with your daughter and I will never ever get to do that with mine!”
Get my drift…. Those words can be so hurtful when you may mean them to be helpful and if you are one of those people who say to that “well, they need to not be so uptight, I am just trying to help.” YOU need to go back and take TRUE FRIENDS 101 and get your head out your rear because being a friend to her requires for you not to be such a self-centered poop!
I feel like this is one of those friendships you have to have in your life. You need to know what its like to always put some one’s feelings before yours. You need to allow them to have complete phone conversations without you really responding. They need to turn to someone that they can just be open with and not have to worry about hurting your feelings by not giving you proper “air time”. You need to understand that the blessings you receive by being so selfless outweighs any other friendship you may have.


#3…
Watch the “religious” talk.
I know you are wondering why I would say that right? I mean, I am a Christian and I should want the whole world to know about God and how He has worked in my life but I think that sometimes the redundancy we as Christians use when someone is ill does more harm to our image than anything else.
If your friend is a believer then they probably already know everything that the scriptures say about handling trials in our lives. They really don’t need you to quote scripture to them and give them every Joel Olsteen book. Trust me, they know the verses and they REALLY don’t have time to read right now. If they want to read they will pick up the book themselves. Some people find comfort in self-help books but a lot of people when they are overwhelmed with LIFE just want some quiet time to reflect not to read a book that tells them they are handling the situation wrong. Often times all they need to know is that you are praying for them and once you have let them know that, be quiet.
If your friend is not a believer, now is definitely not the time to preach at them. The last thing they need in this world is your religious quotes. I have seen people who are not close to God be pulled even further away by an overzealous Christian who means well but their delivery draws a vacuum. Sometimes Christians can also cause the unbeliever to feel as if they are going through this trial because of their unbelief which cant be further from the truth.[See complete side note] You treat the unbeliever just like the believer, let them know you are praying for them and be quiet.
[COMPLETE SIDE NOTE]
okay… back to trials in our lives vs. God. I heard it said best from someone whose child died tragically in a drowning accident, Things happen because we live in a sin-filled world and while God is always in control Satan still has a strong hold on this world too and this world is a fallen place and we are a fallen people. Still not making sense, well to those who feel like only bad things happen to those people who are less than perfect in their Christian walk let me remind you of the verse that says all our righteousness’ are as filthy rags and also, you should read the book of Job. See, sin entered the world and bad things are going to happen but in God’s eyes our works mean nothing to Him because He never wanted it to be about works He wanted it to be about TRUST. He wants us to trust in Him while always remembering that one day we, as believers, will be resting in His presence and all our trials will be gone.


#4…
DO NOT, I REPEAT, DO NOT suggest “this great organic diet that you saw on an infomercial that, you know, that blond actress whose child has a disability switched her son to and he was magically cured!”
I will let you in a little secret, I do believe we should watch the amount of man-made chemicals we put into our bodies but I don’t believe that eating 4 lbs of raw carrots which have not been “tainted” with pesticides is going to cure a SN child. In the actress’ case, maybe it did help. Her child has a very relevant disorder which I know a little about because I have a friend whose child suffers from autism and it is a scary sad disorder so please, please don’t think that I am “downing” her or her child, I promise its not that at all. I just don’t think its the cure-all for every child with every disorder. I realize there are certain diets that show improvements in certain disorders and trust me, if the parent has done their research they already know about it. Be careful again how you mention things to that parent. IF you tell them their child needs to eat all organic or if you allude to the fact that the condition their child has was caused by them not eating organic you have done more damage to that friend’s spirit than what can be repaired.


#5…
You need to be their biggest Cheerleader.
As I have mentioned before my friend with an SN child lives 1,000 miles away so this one is a little harder for me.
[ BECAUSE D, I promise you, if I lived there, i would make myself a cheerleader outfit and put my hair in pig-tails and put a big T on the front of my shirt and everyone in your town would say "Good Lord, please give that woman her meds and send her home!" ]
I am not tooting my own horn at all but I know that you are vocal about things that you are passionate about. Everyone at my work knows that my one wish is to be able to fly to where D lives this year and see her, my family and friends all know about my friend’s child and they often ask me about how they are doing. Even on National Epilepsy Awareness Day I had 3 co-workers in purple that day! They need to see your support. Think about it, when the football team is down by 2 and they just feel like they cant move that ball another inch what gives them the motivation to get out there and move that ball into field goal range…
THE CROWD!! THE YELLING AND THE SCREAMING AND THE “YOU CAN DO IT!” ( like in the movie “waterboy” HA!)
It’s the cheering that makes that football player get back out there and give it just a little more effort and I think the same applies for our friends with SN children. When they see the support and they hear the cheering and they hear the “YOU CAN DO IT” it gives them the energy to get up and push a little harder the next day.

Leaving on a Jet Plane

Day 4. No seizures. Praise God!

We leave tomorrow morning Destin bound. I have never been more ready to relax on the beach in my life. My parents left this morning driving and were able to fit Kendall's tummy time swing and bath chair. Hopefully she will enjoy the sand and we will be able to position her bath chair by the waves. I can't wait.

She loves the swing. Immediately when we put her on it this morning she lifted her head up and smiled. Of course I didn't capture that. The second picture she was on a roll. She doesn't use her feet too much, but she was able to push herself a bit. The stand probably won't last us long, but it came with cables to suspend it from a swing-set, door, or tree. Hopefully she will enjoy tummy time more now. Kendall is unique in that she doesn't like being on her belly because when she loses control or drops her head her poor glasses smash right into her face. But if we take the glasses off, she can't see (no in ocular lens implants since her eyes are abnormally small...) I hope this will do the trick!

Oh, and this is my 100th post! Crazy. I'm sure a lot of you have seen the link to turn your blog into a cute little book on the cutest blog on the block page. Well, I went to it and quite effortlessly was able to print my whole blog, pictures, comments, and all! Worth the money to me. Kamden has tons of cute scrapbooks of his life with cute pictures, decorations, etc...all on acid free paper yadda yadda. I SO don't have the time or the creative juices for that anymore, so this will have to do for Kendall! Poor second child!

I pray the next 100 posts speak a lot of no seizures and Kendall hitting developmental milestones...

Guess What!

Kendall had another seizure free day!

Our THIRD one in a row. Thank you for all your prayers. Please pray this continues!

Kamden and I went to the Chiropractor today. I left with a huge bill and a bag full of dietary supplements! Oh, and a new found interest in acupuncture. What has happened to me? I used to be so against "alternative" medicine. Now, I can't stop trying to find the next natural remedy. I'm still not completely a believer. In fact, it seemed a bit hokey, but I feel better already. We'll see if it helps solve some of Kam's issues...(my neck pain is simply stress, driving, and too much computer, usually nothing a glass of wine in the evening can't fix!)

Kendall's WINGBO tummy time swing arrived tonight. I can't wait to set it up and see how (and if) Kendall likes it! There's a strong possibility it will end up in the same pile of "special needs" equipment Kendall couldn't be bothered with! But I guess we gotta try, right?

We head back up to out therapy center for an OT evaluation tomorrow. We have been receiving OT through ECI, but our beloved therapist is quitting. I also have a call in to Therapy 2000 who swore I would receive a return call in 48 hours. I called four days ago. Justin says they are so 2000 and late. So do I.

By the way, even though Kendall is seizure free and more alert, she smells. I'm holding her in my lap right now. She had a great bath, but she still stinks. Its really weird. Its that alcohol smell with something else I can't put my finger on. Kinda nasty. Not as bad as our lab, but close!

Have a nice evening!

Wordless Wednesday

2nd day with ZERO seizures

and her first day wearing her new hand splints!

Don't you love that smile?

WOW...

Well, I thought twice about posting this...

Being the total pessimist that I am...

Afraid to speak it out loud (or write it)...

But I couldn't resist...

I decided I can't live my life in constant "what if" mode...

So, I decided to let it all go...

And share with the world (OK, just those who follow my blog)...

HOLY CRAP! No FREAKING LIE...

KENDALL HAD HER FIRST SEIZURE FREE DAY!!!

WOOOOOOOHOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

We're Alive!

Thought I'd better do a quick post, so everyone knows we're still alive. This week has been crazy busy with Dr.'s appointments, therapy, and work.

Kendall slipped out of Ketosis twice. She also had blood in her urine. These are two not so good things when it comes to the Ketogenic Diet. So we've been monitoring her closely. Her blood sugar has been fine this whole time though. And her alertness and seizure decrease have made this whole process totally worth it. The Neurologist said we shouldn't see results for about 2 months, but we are. We really are. And it's only been 3 weeks. We've started to ween the Vigabatrin. It's a pretty slow ween, so it will probably take about two months total. Leaving only Keppra and the diet remaining. I pray the seizures will be gone and we can just stay on the diet.

This diet has not gotten any easier. We've been introducing more solid foods and less formula feeds. It is so time consuming and tedious. I can see how people want to throw in the towel early. But, we won't. Hopefully this will be our answer and we can get her off some medications.

At therapy on Wednesday she had the best session she's ever had. She actually sat unassisted for 20 seconds. Her PT sees a huge difference since we've started the diet...which is encouraging.

I am finally taking some way overdue unpaid Family Medical Leave Act. This diet finally pushed my stress level to a breaking point, and Justin and I came to the decision that it just isn't worth it. Its not humanly possible to maintain a full time job and handle everything at home too. Our family is awesome, but its too much to ask to have them prepare all the food and administer medication, and monitor Ketones and Blood Sugar. So I've been doing all that and trying to work! I'm taking 2 weeks this month, and I haven't made a decision about next month yet. I get 12 weeks total (unpaid!!!) So, we'll see. During this time I will be interviewing Nannies aka "Special Needs Respite Care Workers" (any suggestions...) and working to add nursing hours through our insurance. A little help during the day for my mom until November will be a good thing. She is having her 5th hip replacement, then starting Interferon soon after that. We have been so blessed to have her care for Kendall for so long! Finding someone to stay with Kendall during the week that is not family really frightens me, but I'm sure we'll figure it out. If not, I'll be taking a permanent FMLA...

In the mean time, my incredible sister decided our family needs a vacation. SO, part of that FMLA will be spent caring for Kendall in Destin, Fl! We love it there. It was kind of a last minute deal, but we will be there for 10 days. I'm sure it won't be easy packing all Kendall's stuff, medical records, medication, wheel chair, car seat, and putting that restless baby on a plane...but the margarita's on the beach will be so worth it! We leave in a week! Yahoo!