A Light At The End of the Tunnel?

Coming back from the CT scan...all tuckered out!

A visit with the Easter Bunny last night

The dr yesterday said he does NOT think it is a sleep issue. He thinks it is an immunodeficiency caused by her H1N1 and or seasonal flu vaccines. His other thought is a stomach/intestine tumor (but he doesn't think this is likely). So the plan:

This morning... She had her CT scan ...of her chest and tummy. Tomorrow morning she will have a third Spinal Tap... This will help determine if it is the immune issue. They are going to start IVIG (a specialized blood transfusion) after the spinal tap to "fix her" if this is finally the solution. {Candi}

We have a few more updates before Wednesday is over! Ryan wrote a few more posts explaining the path the doctors are taking now.

Reese has her 2nd CT scan this morning at 9:15am provided it doesn't get pushed back by an emergency CT scan. This will help eliminate cancer in her chest and stomach as a possibility. Then tomorrow she gets her 3rd Spinal Tap to confirm what the doctor thinks is wrong. An immunodeficiency caused by her H1N1 and seasonal flu shots that she got on January 12th. If that is the cause then she will be started on IVIG infusions to boost and stability her immune system and stop her ataxia(Unsteadiness). Please keep Reese in your thoughts and prayers that this is the answer we have been looking for and that Reese starts to become herself again.

Neurosurgeon called and said it's NOT the pineal gland cyst that is causing her problems! Great news!!!! We can eliminate the brain surgery option and focus on the immunodeficiency. Spinal tap tomorrow should confirm the doctors theory.

It's amazing how great people can be in tough times like these. Truly brings a tear to my eye each and everyday I read the postive and helpful comments from everyone. My family, friends and extended family and friends on FB really help me keep my head up. Thank you everyone.

{Ryan}

I knew this would happen... Now that she is "dismissed" it is unbelievable to get in for follow up. The sleep specialist who gave her two prescriptions can't see her until May 10. As for the neurosurgeon I can't get past his brick wall of schedulers to get in at all. Why, why would they dismiss her from the hospital on... her worst day?? Making more phone calls... At some point someone will be able to put this puzzle together, right? Hoping before any long term effects happen! Grrrrrr, a very frustrating day. {Candi}

Surgery is NOT scheduled for Wednesday because they don't think the Pineal Cyst is what is causing all of her Ataxia(lack of coordination) after her 3rd MRI. They think that her sleepiness is caused by RLS(Restless Leg Syndrome) and her not going into REM sleep, which is causing by her low levels of Ferritin. So they put her on Clonazepam .... See More1mg/mL to help her go into REM sleep better and Ferrous Sulfate 220 mg/5 mL(Over the counter) iron supplement. Basically, they don't know what is causing her Ataxia so they discharged us and are telling us to wait 2-3 weeks to see if we can get her sleeping "fixed", which wasn't "broke" until we started staying in the hospital. 2-3 weeks ago she was perfectly healthy but she has gotten increasingly worse everyday and we don't think that she can wait 2-3 weeks. If she keeps getting worse she may not be walking or talking at all in 2-3 weeks. It just feels like the Mayo Clinic has given up on us because they don't know. Anyone who has visited her knows how she is acting and it isn't good. {Ryan}

NOBODY TELLS ME NO!!! After hours, literally hours and countless phone calls I somehow got Reese an appointment with the neurologist that they originally said I couldn't seen until May 10th. She will be seeing him at 1:30 tomorrow. I will let you all know what he says and if they readmit her or what. {Candi}

Even though today started out bad...things are looking up! With Reese's appointment tomorrow at 1:30...please keep praying for this family to receive some answers. Also pray for the doctors to have God help them to find what they need to do so Reese can get better and go home! - Kim

To Reese

Weekend Update with Reese Ladwig

Friday:
Still waiting for them to come get her for MRI. Scheduled at 8am... Poor thing is so hungry and thirsty!!

Reese didn't go to her MRI until around 2. She will be in for a couple of hours, then waking up in recovery room, then brought back up. Results will be later. We are anxiously waiting for our princess to return!!! (we hate leaving her for tests).

Reese didn't get to eat until about 6:30 pm after she woke up. The MRI didn't start until 2. She made up for missed time though! She drank 22 oz of apple juice and ate 4 chocolate cover apple slices, 2 spears of grapes, sphegetti-o's, cheddar Pringles and some Reese's pieces for desert! So was hungry!!!

Reese's MRI preliminary results have come back. The "mass" has not changed since the last MRI, good news!! However, they are still unable to determine what exactly it is. After the sleep study they found that she is only in REM sleep for about 8% of the time. Also, her legs are kicking 16 times per minute (5 is cause ...for concern). Also while in REM you should be paralyzed... And she is moving and talking. So they have started her on a sleep med tonight.

Saturday:


Had some friends come and visit. It was a good afternoon. We miss home.
Thank you to the Lockards, Cassandra, and Taylar for making the trip up to see Reese. Also, thank you to all of our Apex family who sent your love!! We can't wait to read all the cards!

Sunday:
Sounds like we are headed over to stay the night (until Wednesday) at the Ronald McDonald House. No, they don't know the cause... No, she isn't better... But hoping that getting her out of here and going to feed the ducks and get some fresh air will help everyone.

I feel sick to my stomach... Is it something I ate?? Or the fact we just took Reese from the Mayo Clinic physically worse than the day she was admitted?

Anything that has been sent here to the hospital will be forwarded, anything being sent from here on out can be sent to our house and someone will get it to her. This way things aren't getting lost between the hospital, Ronald McDonald house and home. Thanks again for all of her encouragement. As many of you picked up I am starting to get frustrated and worried sick about Reese. It makes all the difference to log on and know we have so many family members and friends helping us along. (this week she got a card that started out... "you don't know me, but I read about you on the Internet". She doesn't even know us, and took time out of their day to make (A HANDMADE CARD) and send it to her!! Thank you, thank you, from the bottom of our hearts!!

{These are the posts that Candi made over the weekend on Facebook. Also, if you need an address to mail something to Reese, please email Candi @ candimichelle{at}gmail {dot}com and she will send it to you. -Kim}

Sleep Well, Princess

{Upclose and personal! Their desk is pushed up to our bedside. (between here and the bathroom!) This is where the sleep study technician is going to spend the ENTIRE NIGHT typing away on their computer while Reese sleeps.}
Got some encouraging news from the EEG last night. It appears that Reese is NOT going into REM sleep at any time. This would explain her increasing sleepiness and instability. This doesn't eliminate the pineal gland lesion as it may be effecting the melatonin levels causing her sleepiness. But at least it gives the doctors another angle to check. Sleep study scheduled for tonight!

Hallie lost her second tooth to make room for her first permanent tooth! Just an FYI for any younger readers, the tooth fairy can find you in a hotel room 3 1/2 hours from home. Dad also hears they pay pretty good these days, but they don't offer benefits!

Princess Reese and her new Crown

Reese's favorite PICU came to see her as she headed down for the EEG. Looks like big sis is keeping Reese happy!

Reese's teacher and friends from school sent her Bear. And Bear even got her head done like Reese's EEG! Ariel is Reese's favorite Disney character and was sent to her by a special friend too. Thank you!
3rd EEG. It looks bad but its not. They just wrap her head so the leads don't come unglued. They are still looking for more definate answers. 3rd MRI with spectrogram scheduled for Friday so keep praying for more answers.

Goodnight Reese

Bedtime conversation...
Ryan: "We love you, Reese."
Reese: "I know you say it all the time."
Ryan: "We don't want you to forget it, do you love us?"
Reese: "Yes I do, now just shut up!".

Good night Reesey!!!

New news!

They are monitoring Reese for the next week.
MRI and Surgery will be on Wednesday, March 31st.
Please keep Reese and the entire Ladwig family in your prayers!

{edited with post from Candi's facebook wall}
I wanted to confirm our feelings about surgery... When I posted it we got a lot of "positive" comments. Ryan and I don't feel that way about it. Here is why...
They are unable to determine if this mass is actually causing the physical problems that she is experiencing. If they said this would make her all better we'd jump on it in a second. But that is just not the case. We could put our little girl through a brain surgery and in the end it wasn't even the cause and we'd be back at square one. I hope that came out clear. Also, when we asked how risky this procedure is on a scale of 1-10 the surgeon told us an 8. They make an insision, remove the back of her skull, lift up the back part of her brain and then are able to remove the entire gland. This isn't an easy surgery. The surgeon contacted us this afternoon and they have scheduled another MRI tomorrow to confirm this decision. We are hoping to have a confident answer either way. She will also have an EEG tomorrow afternoon.

Yes, Princess Reese You Can!

Ryan was showing Reese the prayer map and explaining to her that all the stars are people praying to God to make her better so she can go home. Reese's eyes light up and she said, "So I can to gymnastics and see Miss Heather?!?" and Ryan says YEAH! She goes on to say, "and I can go watch Hallie at... cheerleading and I can play with Bentley(our dog) and I can..." Ryan tells her she can do whatever she wants WHEN she gets better.
This what you're all praying for:-)

We had as much fun as we could while we wait for answers... Still no word. She was awake most of the day!! Her physical abilities lack when she is that tired, but she was having a good day. ;)
{from Candi's facebook}

Coloring with sister Hallie, Aunt Becky, and Aunt Jess.

Reese moving from the PICU to the peds floor. Yay!!!

Reese's Thank You

{And the princess waits...

This is an update from Friday until today...

Friday: Just before the 4 hour MRI

In the ambulance that took Reese to the jetway....because of the snow she was flown to Mayo Clinic in a jet instead of a helicopter.
Reese being a little pickle!

Going to the Mayo clinic for further tests. Still there were no answers. So many people were and continue to pray for Reese from around the world!

Arriving on a jet at Mayo Clinic on Friday evening

Candi posted this on her facebook on Saturday morning:
We have had a busy morning meeting all new drs and specialists. Right now she is in the PICU (pediatric intensive care unit) but they are moving her to another room because she is stable. They are just reviewing tests and results from Blank today and making lists of new ones so they can... do all the blood and spinal tap work in one shot. She will be seeing tropical disease specialists, peds sleep specialists, peds neurologists, infectious disease To name a few.

Later on Saturday Candi said that they had found a mass in the center of Reese's brain. This was something that Blank Hospital did see, but did not think it was the cause. Candi and Ryan continue to be positive throught all of this and they know being at the Mayo Clinic in Minnesota is the best place for Reese to receive treatment right now. Ryan also posted that they would do another spinal tap to determine what type of mass they are dealing with. They both expressed that they were glad to know what the problem is and would continue to pray for the best outcome.

Reese did go in for the spinal tap last night and now as it is Sunday afternoon they are waiting for the results. They also did another blood test this afternoon which will confirm the outcome of the spinal tap. The family is all together now in Minnesota as they wait to hear from the doctors and specialists. Please continue to pray for Reese. She is such a light in all of our lives!

For those of you who have asked Reese's address at the hospital it is:
Mayo Clinic
St Marys Hospital
Pediatrics
1216 Second Street SW
Rochester, Minnesota. 55902
Attn: Reese Ladwig

"Words can't really describe how amazing it feels to see all the love, support & prayers that have been sent Reese's way. Thank you from the very bottom of my heart! It really, really does help to see all your heartfelt comments of couragement. They DO make a difference and are helping us through these tough days. "

{Ryan posted this on his Facebook on Saturday night}

I will post more updates as I hear from Candi and Ryan...

Kim

Need Your Help...Operation: Cheerful Heart

Hi everyone. This is Kim, Candi's friend. She has asked me to post updates here since the internet at the Mayo Clinic is very spotty. I will be mostly posting pictures and the updates that Ryan and Candi post on Facebook from the hospital. But first, I would like to let you know about something that is being done to let Reese know how much we love her.!

{Click on the picture to read it easier}

Princess Reese

Today she was treated like a princess!! Look at all the goodies from the Hamanns! Lori, Parker and Owen came to visit today bringing baskets of goodies for her and the family! Thank you N,L,P & O as well as Don and Jane!! {Lori, we'll discuss the whistle later....hehehe!!}

Just as they were leaving "her friend" (and mine!!) Michele came to visit. She brought her all kinds of activities and a cute bunny cup with straw that she is using for her Shamrock Shake right now!! {sorry I didn't get a picture!!}

When I got back from taking a shower and picking up some cutie pjs for Reese there was a DOG in the room :) She was so excited that "Babe" the Irish Setter stopped for a visit. I have a picture on my phone I will try to post later, or to Facebook.

And they kept coming...

Jennifer, Annie, Janey, and Sam stopped by, too! Reesey LOVES Annie, so she was super excited to get hugs from her! They brought her some fun markers and note pad, but most importantly NAIL POLISH!! It was a HIT! :) She was so excited, and Annie even offered to paint her nails for her!

Being in the hospital is no excuse not to pamper yourself :) Reese has painted her nails a dozen times tonight (as well as mine!!)

Tonight she was telling Ryan about getting to ride in the wagon to "the hair fixin' place" :) {where they put the sensors on her!!} She has such a great outlook on everything, she gets her hair done and her picture taken and sometimes gets pokes. But this is a fun place :) Not sure how long this will last, but for now she is being such an tough little cookie!

Now to the details of the day...

She had a physical therapy "session" that evaluated her. She was at her worst. Along with all of the tired and sleepiness she gets very weak and loses balance. She also has less control over her large motor skills. (such as squatting, walking, balancing) We were glad the physical therapist saw this. Because she is very inconsistent... you never know when she will have that kind of "spell". After she reported back to the neurologist the red flags went back up.

Tonight they started ANOTHER iv... this is her third now :( ...and unfortunately it took 2 tries. Then they sent her off to "get her hair done" down in EEG, to prepare her for a longer EEG plus video testing. She has to keep them on through the night and up to the point of her full head and spine MRI tomorrow. {the last one she had was just the head} Also, this one is going to be a contrast MRI. This test is about 4-5 hours long and she will be sedated for this. She also had to give several vials of blood tonight and urine and now we wait on a stool sample.

We are hopeful that answers are just around the corner!! Thank you for all of your thoughts and prayers and ideas and inputs as we find out what is causing her to be so tired and weak. I also want to thank all of you who had e-cards sent to Reese. She loves getting them delivered to her room!! If you haven't had a chance please take a minute and send her one. Just follow this link:

http://www.iowahealth.org/body.cfm?id=171

They print them and deliver them to her room #416 at Blank Children's Hospital :) What a neat idea!! Today she received 63!!! YIPEEE!! I read them to her and she kissed each one! She is such a lucky girl to have all of you thinking about her! She is excited to get home and "hang them on her wall"!!

I will continue to update...

Sleeping Beauty--UPDATED

Our little Reese has turned into Sleeping Beauty. She started taking naps while we were on vacation, after getting back her naps became more and more frequent. And for the past 10 days or so she has been sleeping about 20 hours a day. After no luck at the Dr (they thought I was crazy, and put her on Amoxicillin, to get shut me up... didn't work). I knew something was going on... they told me she was probably just growing, or tired from the trip... and kept putting her off. Finally, on Monday as her awake time became more groggy I brought her to the Blank Children's hospital ER... they took it very serious and have been GREAT to work with! After running some tests they admitted her to the hospital and have now done several blood tests, a CT scan, an MRI and an EEG. We have gotten normal results from everything (but the EEG, we are still waiting on) She is being a little trooper.

This morning she asked:

"mom, are we home?"

"no."

"we can just pretend"

Today the ISU softball team came to visit. We will keep you all updated.

Wanted to let you all know her EEG came back normal. We have visited with the pediatric neurologist... and he is puzzled as well. They have a whole "new" list of tests now they are running, she had to give 20ML of blood and some urine. She again is a strong little girl who didn't fuss too much while they "dug around" in her hand (since both arms have already been used up this week) to get veins to give enough blood.

Today has been a sleepy day. Yesterday was a better day and I kind of got my hopes up. Today she has been REALLY drowsy and has only been awake for about an hour so far. Thank you all again for your thoughts and prayers. I will continue to update you on Facebook and this blog.

Faith, Trust and Pixie dust

It is so hard to believe our vacation is over!! Now I need another week to re-coop!! It was an amazing week! We were on the go all the time! I can't wait until our next cruise!! For now we have faith, trust and pixie dust to remember the "magic" of our vacation! As Ryan pointed out... I slacked on the photo taking and only took 798 pictures!! It will take me a few days to sort through all of them and get my posts done. So, in the meantime here are a few of us...