Vaccine Nazi

I've never been what I call a "Vaccine Nazi". The mother who vowed to not get her kids vaccinated because of the dangers of them, and then preached it on everyone else. I've never had a reason to investigate vaccines further than my pediatrician's recommendation. Yes, I know my child's health is a good reason, but they've always been healthy children. MAYBE had a mild fever once from a vaccine. I always would think the risks are so small and I wouldn't rather my child have Polio, or Measles, or some of the other diseases.

Now that Hailey has had Guillain Barre, there are certain vaccines that she shouldn't get though. According to the CDC website, the vaccines that say "You shouldn't get this vaccine if...." and then in that list says "You have ever had a history of Guillain Barre Syndrome" that I have found are: The Flu Vaccine (probably the most well known), The Meningitis Vaccine, and the Tdap (which has a bunch of different names - I knew it as Dtap. This is a combination vaccine and I want to do more research to see which of the illnesses it covers is related to the GBS).

The reason I initiated this research now is because yesterday Hailey had a follow up appointment with her pediatrician for her GBS and they also did her 4 year old check up. I asked when I made the appointment if there were any shots at a 4 year old appointment, the receptionist told me no, so when the nurse told me, "It looks like she is due for her Prevnar vaccine today" I was thrown a little off guard. 1) I didn't prepare Hailey for a shot at this appointment and 2) definitly didn't think they would even consider doing any vaccine so soon after her hospitalization.

I trust her pediatrician. He diagnosed her GBS immediately. He called our house while we were at the hospital and spoke with my Mother In Law for updates. He called the hospital for updates. We called him a couple of times from the hospital for advice and second opinions. I questioned the Prevnar vaccine she was due for and the timing of giving it to her and he assured me that it's a dead virus so we didn't need to worry about it with the GBS. He also said her case of GBS seems to be a very freaky thing. Hers wasn't caused by a previous vaccine, but by a virus she had a few weeks before (or the cold she was almost 2 weeks into when she stated showing signs). It was a vaccine she had already gotten before. She had no side effects from before, so she shouldn't this time. So I gave the permission to give her the booster.

All evening Hailey complained that her arm was sore. I figure she tensed up, that always makes it hurt more. This morning and afternoon, if you touched her arm, she said "Ow!" and said her arm was still sore. Tonight at the store I noticed a splotchy looking mark at the injection site. My first thought was to call the pediatrician, however, after going to the CDC website, this seems to be a normal reaction for this vaccine so I gave her a dose of tylenol for the soreness. Tried getting her to put ice on it while watching TV but she wouldn't.

I kick myself for not sticking with my gut that its too soon for any vaccines. Her immune system is probably still healing from the GBS. Maybe it is a normal reaction, but right now I am super paranoid about anything making her sick again and this little side effect just has my nerves going even more than before.

If you have any information about vaccines and GBS I'd love to hear it! I was concentrating on getting Hailey healed, and now that she is, I am trying to educate myself further about everything.

Chapter Closed

Yesterday was Hailey's last day of Physical Therapy. Her therapist tested her again during their session and said she did great and was "well within normal range" with everything she asked her to do. They did an obstacle course where Hailey would have to climb up, down, etc to get to the end. They did a rope ladder which her therapist said she would normally hold at the bottom so the ladder couldn't swing (making it easier to climb), but Hailey did it without her holding it still. They even walked in moon shoes which her therapist said was hard and Hailey did it (holding hands, but her therapist said she had no doubt if they did it a bit longer Hailey would have been able to do it on her own). She said Hailey is a little weaker in her left leg still, but it's a normal weakness and it's only a smidge. A dominant vs not dominant, normal weakness. She also reassured me that the chances of her coming down with GBS again are just as rare as her catching it the first time. Although that should put me at ease, with as rare as it is, Hailey got it. She said that we know our child and knew something just wasn't right the first time and because we caught it so early she really believes that's why Hailey made such a fast recovery. And of course, if we had any questions, notice something, whatever, we could always call her.

Total Rehab Center in Robinwood rocks my socks! If you ever need physical, occupational, or speech therapy (which I hope you never do!) and you live close to Hagerstown, MD you'll want to go there!

If you remember, Hailey finished Occupational Therapy a week or so ago too. We are now therapy free, almost weaned off the nerve blocker medication with no complaints so far of any pain, which essentially means, we are closing the door to this chapter in our lives. Of course that doesn't mean that we'll never think about it because truth be told, I think about it every.single.day. I read articles about other people who have had it and how they explain it and I always wonder "Is that how it felt to Hailey?" I am always wondering, and in fear of the answer, "Was Hailey in pain at all in the hospital?" "Was Hailey scared?" "Did she understand, even if I'm sure she was scared, what was going on?" "How much does she remember?" "How conscious was she really during her hospitalization?" And of course when I think of the interaction we had with her, asking her questions and her head nod answers, her being upset and trying to cry over the breathing tube, following directions when asked to move parts of her body, I know that she was really awake during all this, and how scared she really must have been. Reliving the first few days in my head. It all just breaks my heart!

Then, when I get upset thinking about all those things, I try and take a peek at her as she is running around and playing with her brothers. I think about how well she is doing now.

This experience has taught me something, or maybe I should say, reminded me. Family is the most important thing. My kids, really enjoying them, takes priority over everything. Work can wait, cleaning can wait, who cares if we are eating hotdogs instead of an elaborate dinner because I was too busy enjoying my kids to prepare a big dinner?! It has shown me how precious life is. Even the healthiest of kids can be fighting for their lives in an instant. Hailey was running around like a normal kid one day and within 3 days she's on a breathing tube and completely paralyzed. Never take those healthy and fun moments for granted thinking that is what will be there tomorrow. That is not guaranteed. The dirty laundry is guaranteed to be sitting there tomorrow...a healthy child to enjoy is not.




I plan to continue writing in this blog. It's been somewhat therapeutic to me and I have actually enjoyed it. So don't go far!

Ballet Recital

3 Months and 1 week after the day she was put on a ventilator, Hailey participated in her end of the year Ballet Recital which was held at the Maryland Theatre. This whole week has really been almost a period at the end of the journey sort of. On top of the recital, Hailey has her graduation program from her 3 year old preschool class tomorrow. The fact that she was able to rejoin both of these programs she loved in time for the end of the year is amazing and we're so thankful! I'll be sure to take lots of pictures of her "graduation", but for now, enjoy some ballet pictures!

Their show was called "Squeeky the Mouse". I told her before she joined her dance class "I'd tell you to break a leg, but with your luck you would!" (Getting GBS is luck of the draw really. Only 1 in 100,000 odds and she hit it)

Hailey and her friend. Hailey is on the left.



The whole class during the dress rehearsal.



Hailey with her "Break a Leg" Bouquet after the show.

Amazing Progress

I haven't been good about writing updates. There just really hasn't been much news to report...until now!

Wednesday when I was sitting in the lobby of the therapy office, the receptionist called my name and told me Hailey's Occupational Therapist wanted to see me in the back. Hmmm...is that a good thing, or a bad thing?! I gathered all my ribbon and materials I was working with and went into the therapy room. Her therapist then informed me she was having a hard time finding something to do with Hailey that was hard for her to do. She said even the things Hailey didn't know how to do when they first would do it, by a couple of times of trying it, she would be able to execute it with ease. The therapist said it shouldn't be hard for her to find things to do with the patient and when it is, that usually means its time to discharge the patient!! So, she is going to see Hailey on Monday and Tuesday of next week where they will concentrate on holding a pencil the correct way, this is the only thing Hailey resorts to "fisting" normally. Sometimes she'll hold it the proper way, and transitioning from toddler fisting to holding it correctly is age appropriate, sooo...Tuesday will be Hailey's LAST DAY of Occupational Therapy! Hooray for Hailey making great progress!!

Hailey's Physical Therapist tested her today to see where Hailey's strength was and to see if she would still need to see her. My husband went to therapy with Hailey today. He told me that the therapist said Hailey is making great progress but she still sees a weakness in her left leg. She stumbles some with that leg so for now, she will still be seeing Hailey twice a week. She said she has her scheduled for another month, but it might only be a couple of weeks. We will see. Whatever Hailey needs we'll do!

Tomorrow Hailey has a follow up appointment with her pediatrician for a recheck on everything. I am sure he will be testing her reflexes as they were still very weak when we saw him last, which was only a few days out of the hospital. I am going to ask about her nerve blocker medication, how much longer he thinks she'll require it. Dave and I both feel like she probably doesn't need it anymore and she never says anything is bothering her, however, maybe that's because she is on the medication. We'll see what the doctor says. I got a letter from our insurance company, I'll bring it with to the drs, that says we have to fill that particular medication in 90 day supplies because its a long term labeled medication. If we do fill it again in a 30 day supply we'll be subjected to a higher copay. Of course the letter doesn't state what that amount would be.

Hailey has made amazing progress this past month since being discharged from the hospital! She has started back in preschool one day a week. She has her end of the year picnic for that next week. She also started back in her ballet classes and has a dress rehearsal and then her recital next weekend at the Maryland Theatre! She is so excited (so am I!)! It amazes me how she has fit right back into her normal life. We have been blessed by the pace of her recovery!

Two weekends ago, after vowing to do more things as a family, we took a day trip to Gettysburg, PA to visit "The Land of Little Horses". It's the most beautiful petting farm you will find! We all had a blast (even the older boys who aren't as in love with horses as Hailey is)! I'll end this post with a couple of pictures!

Our week in review

I was going to post this picture at the end of the entry, but it keeps putting it at the top!! This picture makes my heart so happy!! Hailey got a bike for her birthday! Her therapist thought it was a great idea and would be great therapy for her. She has actually started peddling herself! This is from a walk we took this past week with one of our neighbor friends! Good times!

Hailey had a great week! We had therapy Mon-Wed this week. Physical therapy was supposed to be in the pool on Tuesday, but we received a phone call that it would be "on land" instead because a light bulb over the pool burst and there was some glass in the pool. Hailey was a little disappointed (as was I! I am interested in watching and seeing what they'll be doing with her).

They've been working a lot on her fine motor skills. Coloring with smaller pieces of crayons to promote use of her pincher grasp instead of fisting the crayon. They are harping on this, however, I'm not 100% sure, but I don't even think she was using her pincher grasp before all this happened to color and write. If she was, it was only sometimes so she was still transitioning to this milestone. It won't hurt though to have them encourage it. They also were working with clothes pins to strengthen her fingers and playing with putty for the same purpose. The Easter Bunny brought Hailey some playdoh in her basket. She must have realized this would serve the same purpose!

After therapy one day this week we visited one of her preschool teachers. Hailey had so much fun playing with her younger son! They didn't know she was walking yet and Hailey loved showing it off up and down their hallway! It was a good time!

Other milestones this week: Hailey started back in dance class! She did fabulous! I am able to watch on the television in the lobby what's going on in the studio and Hailey did wonderfully! There is only a couple of things like skipping where Hailey can do it, she's just slower than the rest of her friends. It's the same with her running. She's started trying to run again. It's more of a fast walk, marching looking thing. The great thing is, Hailey doesn't care/realize she is any different right now than the rest of her friends and she isn't letting it hold her back. Saturday we had pictures for dance. She initiated races in the studio and of course everytime she would lose, but just kept saying "Darn! You win again! Let's race again!" I am so happy that she isn't taking it hard.

Hailey has also requested to start back at school. There isn't many classes left (school lets out mid May) and after speaking with her teacher, we have obliged. She is only able to go one of the two days she would normally go as we have a therapy scheduled on the second day. She has her long therapy that afternoon though so I'm going to keep an eye to make sure the day isn't too much for her with everything. She can fatigue easily right now. Her therapists have said that Hailey is really good letting you know when she is tired and needs a rest though. It feels good to be back to "normal" somewhat.

To top off the week, I've got both the boys who have pink eye!! Ack! We just had it go through the house in January...every single one of us got it. Luckily I've got plenty of eye drops left from that showing and we've started treatment. I pray Hailey doesn't get it (It's one of the viruses she tested positive for in the hospital, although her eyes weren't pink...carrier maybe?)! I'm just so paranoid about her catching any kind of cold right now, as innocent as they may be. It's going to happen sooner or later, I know, and I also know she'll be fine, but it still has my nerves in a tizzy!

Much Love and Many Thanks to you all!

-Jen

Therapy and Fundraisers

Hailey's in the middle of her first week of therapy. So far she has only done occupational therapy. Next week starts 2 days a week of physical therapy as well (this week she only has it once while they rearranged their schedule to get Hailey back to back appointments on Tuesdays). I've been sitting in the waiting room while Hailey goes back with the therapists. I think they prefer it this way. The kids are more apt to participate. My mother in law bought me a book to read while there. I took it out the first day, but just can't get into it. I'm not a reader. I'll pull it out another time and try again...someday.

Therapy has been working with Hailey on her fingers. Fine motor type stuff. The first day they made a necklace. Hailey had to get the beads out of a bin filled with beans and then string it through her string. It's a really cute necklace actually. It says her name with letter beads. It has a pattern so I am sure the therapist told her something like "Find a green bead". Otherwise it would be a mix of everything and letters that don't even belong in her name. They also worked with clothespins. Opening and closing them. This was towards the end and the therapist said after a bit Hailey started saying her hands were tired/hurt. She explained that because of Hailey's syndrome she asked her to do just one more and that was the end of that. Pushing her too much can actually cause her to regress so it's a fine line. She said until she feels Hailey is lying to use it to get out of doing something, Hailey basically runs the show.

Yesterday they worked with stickers. Made a birthday card for Hailey (her 4th birthday was on Monday!) and Hailey got to decorate it with stickers. They also worked with lacing cards. Both of these the therapist told me Hailey had a little trouble with. The stickers she had a hard time peeling off the paper, although after a few, she did get better. Hailey brought out a binder that we bring back and forth now that carries her "homework". Last nights homework was to put 2 sticker sheets on a piece of paper and also had two lace cards for her to do. Dave did these with her while I was out which was nice. It gives him the chance to watch what she can do and interact with her. He said she did great with it.

We have more occupational therapy today and then an early morning physical therapy appointment tomorrow. Then we're done with our first week...Hooray! The progress Hailey has made has been amazing. When I really stop and think about it....it was only 1 month ago she started falling and walking funny. About 3 weeks ago she came off of a breathing machine. And today she is walking on her own (wobbly and small steps).

The first Insurance Explanation of Benefits came in the other day along with our first hospital bill from the hospital we went to first before they flew her to the bigger University Medical Center. For those of you who were wondering, without insurance, a helicopter ride from one hospital to another will cost you about $30,000. My jaw dropped at this figure. I knew expensive, but that's the price of a new car, for a 20 minute helicopter ride. We didn't even get a lousy Tshirt...however, there were great paramedic nurses in the back taking care of my daughter to make sure she arrived at the next hospital alive. That's worth it.

Which brings me to my next topic. The amount of support we have been shown has been truly AMAZING! My facebook boutique friends did an auction of all sorts of handmade products to raise money to support us while we were in the hospital. It's not cheap to eat in a hospital and of course neither of us wanted to leave Hailey's side to get something outside of the hospital. It also helped with gas when either Dave or I went home for a day to gather more things and visit with our older sons who we missed while we stayed with Hailey. It helped out sooo much! This auction was arranged by Jessica, owner and designer of One Little Bow. You can click that link to go straight to her facebook page. That auction has since ended however we've got more amazing people in our lives!

Desiree Rose is hosting a fundraiser with Pampered Chef. Proceeds from anything you purchase is being sent to us to help out with the medical bills and rehab bills that are starting to come in.

Here is how you can help!

1- visit www.pamperedchef.biz/drose

2- Click shop online Enter Hailey Clark as the Host

3- Shop generously to benefit Hailey!!

ALL PROCEEDS go to the Clark's! If you are interested in hosting your own show to help the Clark's and earn Free product a portion of those proceeds will go back to the Clark's too!!

Thanks so much Desiree!

Another great friend Kathy Bandy has a Scentsy benefit going on. Scentsy is a plug in smell good system for your house. They also have goodies you can use in your car or anywhere else you can think of! I own a bunch of this and LOVE it!

You can go to: https://kathybandyscents.scentsy.us/Home and on the left side click on the "Benefit for Hailey" party. She is donating her commission to us.

All this support has been so amazing to us. We didn't realize how many people we had in our lives that support us to the extent everyone has! It's been eye opening and has made me become a better person as well. I vow to pay forward all this support everytime I can!

I will update again soon! Thanks for everyone's prayers!! It works! I'm a believer now!

A post from Jen!

OMGosh! I am actually sitting at a computer viewing this blog instead of on my cell phone and it looks sooo good. I can't thank my sister enough for starting this blog! A doctor in the beginning of our journey recommended doing a blog as a way to keep friends and family up to date with everything that was going on and it was the best idea! For the first couple of days, we spent every free minute texting, emailing, updating facebook, and making phone calls. Every conversation and post was a repetitive, emotional mess. I owe my sister Heather big time for making timely and accurate updates. She spent a lot of time doing this and it took time away from her own family time. Heather, THANK YOU! I feel like I could spend every minute of the next year thanking everyone and it wouldn't be enough. My own customers who never once bothered me about pending orders that are now almost 2 months old. The many emails and comments with words of encouragement, thoughts, prayers. You don't even begin to know how especially during some of the worst times at the hospital, sometimes just the smallest little comment would help. My husband's fire department who brought us dinner almost every single night, their support and gifts. GREAT neighbors who showed my Mother in Law support by bringing meals or taking our older boys out for the afternoon, or just stopping by to see how SHE was doing. My MOTHER IN LAW especially! I don't know what we would have done without her! She basically missed worked for the last month to take care of our boys and pets. Became a "mother" again for the last month...dealing with school work and behavior. I know it wasn't easy. She also has stayed with us this last week while we got accustomed to our new normal. My own family who came and visited with us at the hospital many days. A change of face to look at, a shoulder to cry on (many times), a conversation other than "medical" stuff, somebody who could be strong for us and allowed us time to not be, was so nice! There are so many of you who I haven't mentioned and I want you to know that my husband and I sincerely appreciate every thought, prayer, and donation. We are truly blessed with the people in our lives and I didn't even realize just how much! Now for what you probably came here for...an update on Hailey! This past week we had evaluations with the rehabilitation place Hailey will be going to. She continued to amaze everyone there with her quick progress! Occupational Therapy determined she would like to see Hailey 3 times a week. This is for Hailey's fine motor skills. The neurologist who oversaw Hailey's care in the hospital said he first thought Hailey's feet (walking, etc) would be the last thing to come fully back, but he now feels its going to be her hands. The therapist in fact said "The hospital sent a report of what Hailey could and couldn't do and I shouldn't have even spent time reading it because what they said she couldn't do then, she can already do 2 days later. I should have just asked you guys for a report this morning!" We also saw the physical therapist. She has determined she would like to see Hailey twice a week, one day of which will be spent in their pool. The water temperature is kept in the low 90s which is a therapeutic temperature she said. The other day will be spent either outdoors or in their "play room" working on things. It's always very interesting to watch them interact with Hailey. They would have her do things and Dave and I weren't even aware she could do them yet! For instance, she had Hailey walk down the stairs. Hailey held onto the railing with one hand and the therapists hand with the other. She had a little tykes slide Hailey wanted to go on and the therapist helped Hailey and informed us Hailey had pulled to a stand all on her own. It's like watching Hailey go through the milestones she accomplished as a baby all over again, only at a much faster pace. They are as exciting the second time around as the were the first! We now have a regular therapy schedule which starts next week. 4 days a week will be spent going to therapy sessions. We also had an appointment with Hailey's pediatrician. I can't even begin to tell you how happy I am with the practice we belong to. They quickly diagnosed Hailey with the Guillian Barre from the beginning. If she had been misdiagnosed, this blog could be about something I don't even want to think about! For something this rare, I am so impressed with how fast they picked up on it! The pediatrician is going to be seeing Hailey again in another month to keep up with her progress and refill her prescription for her nerve medication. Dave and I? We're hanging in there. I think about the events of our last month constantly. Flashbacks of the most horrible parts. I am hoping time will heal this wound and it will be a distant bad memory. Dave goes back to work this week full time. He was approved for Family Medical Leave Act so if he needs a day off to take Hailey to therapy or drs appointments if I can't, he can do so freely. He also plans to start back on his duty nights at the firehouse very soon as well. Things are getting back to "normal". A new normal. A different normal. A much happier normal than the last month. To close, I want to wish the BRAVEST, STRONGEST, little girl I know, Hailey, a Very Happy 4th Birthday! We're having a VERY small party for her tomorrow at our house. Her real birthday is Monday and we are over the moon that she is spending her birthday at home instead of in the hospital! Her immune system is dramatically weakened by the plasmapheresis treatement she endured so we have to watch how exposed she is right now, however, we had a big party reserved for her at Pump It Up...a big moon bounce filled place. We had plans on inviting all of her friends from school and the neighborhood and we plan on throwing this big shindig at some point this summer. Instead of a "Birthday" party it will be a "Hailey can jump and run again!" party! We can't wait to see everyone there! I plan on writing updates often to keep everyone updated! Keep checking back! And let me say once again.... THANK YOU FOR EVERYTHING!!!