A Very Special Case.

Here is is! Christmas 2018 give back project is ready to roll! Visit visit the event page for more info! https://www.facebook.com/events/308791043060575/

Guys....are you ready for it?! Each year Case for Case's birthday (December 21at) and Christmas we try to do a great big "give back" project for the Children's Hospital of Pittsburgh. We team with Rooting for Ramsey and have collected everything from toys to ornaments. This year we are collecting non perishable foods for the family pantries! Each unit has a little kitchen with cupped that are often scarce. There is such a need for quick and easy snacks that will fill families up when they are low on time and or money. We will be collecting food from now until December 21st! We will be providing a list of food, an address to send the food to and flyer to share with your friends and family! Thank you for always supporting Case and for helping us give back to the hospital that gives us continual hope!

"Your grace abounds in deepest waters Your sovereign hand will be my guide Where feet may fail and fear surrounds me You've never failed, and You won't start now" Two weeks from today I will be in the Pediatric Intensive Care Unit at Children's Hospital of Pittsburgh. I'll be holding a tiny 3 year old with a hole in his scull and a catheter jammed in to monitor Increased Inner-Cranial Pressure in his brain. I'll be praying, wondering, maybe crying or laughing. I won't know if the following Friday I'll be handing my precious 4th born to a Neuro and Plastic surgeon for an 8+ hour scull, brow bone and fore head reconstruction surgery with.....I won't know how that is going to go if it does happen. I will have to trust, continually turning my anxious thoughts over to a sovereign God believing he will never give me more than I can handle and by that I mean what doesn't kill me makes me stronger....... Before the birth of our son all Chil...

Since Case was born, almost 23 months ago, I gained a second home. Case spent 38 days after his birth at Children Hospital, Pittsburgh and several hundred hours after that. It takes between 2 and 3 hours (depending on traffic) to get there. We go between 2 and 4 times a month, usually. Between appointments, x-rays, blood works, surgeries, tests, tests and more tests we feel like we have two homes. Half of my heart is here in my physical home and the other half in the home that has saved and enhanced Case's life. Yesterday, for the third time in 3 weeks we went to our second home. It was only for a follow up with Neurosurgery but it was pretty early so we went last night and stayed at the Ronald McDonald house. I love that place too I would tell you how much, but that's a whole other blog. Anyway, we saw the PA and the surgeon who untethered Case's cord. His wound looks good. They still don't want him bathing (only sponge baths) for 4-8 weeks (when the stitches complet...

Tomorrow we go to Case's first home, the Children's Hospital in Pittsburgh.  Case spent his first 38 days of life there. We've spent countless hours and sleepless nights there. It has saved and bettered the little guy's life. As I've sat in the waiting room, sometimes between hours of appointments, I watch the people. It seems obvious who the natives and who the foreigners are. The natives often come with their children in wheelchairs or adaptive strollers. They come with toys, snacks and drinks. They have multiple sheets for multiples appointments and look tired. This is their life. Day in and day out their sick and or special needs child comes first. They've talked to countless doctors and sometimes hear things they've never imagined. And then you have the foreigners. The parent's of kids who have to come once or twice. I have nothing against the  foreigners, I just can usually tell who they are. They come and look like they got a full night's slee...

"When he gets that tube replaced, he'll feel like a new man!" -D irect quite from his older sister, Meredith who is 8.:) Mr. Tough-as-Nails is having another procedure today. His GJ has worked its way out of his intestines and into his stomach. No one knows when this happened but we found out via x-ray on Friday. Since Friday he has gotten progressively worse. He is retching and vomiting a little more each day and is experiencing pain. Yesterday morning and afternoon he was pretty uncomfortable. He pointed at his tube and said "ow" a few times. It is important that we get this tube into the right organ for obvious reasons. So, today at three he will head to the IR at Pittsburgh Children's Hospital and will come out a "new man" . Little man has been through a lot in the last 19 months and it seems things aren't slowing down. The pediatrician is adding another specialist for his feet and it seems little man takes one step froward and two steps ...

Tomorrow is a big day for our mini-man. It will start around 5:30 am when he'll be awakened, dressed and changed for the day. Around 6am his nurse  he and I will head to Pittsburgh Children's Hospital (Dan works). Once we arrive, we will check in and head to his spinal sonogram (around 9am). They are checking his Sacral Dimple (a dimple at the bottom of his spine) to see if it's tethered and  Spina Bifida Occulta . Then we head to an 11am appointment with the surgeon that placed his Mic-Key and did the fundo. Next is an 11:30am appointment with Dr. Rouldolf (his GI). After that is a 1:00 appointment with his dietician, Stacy. Then a cookie swallow study. Just yesterday they added another upper GI. That will be next. At some point we will need to get his blood drawn. We will then check into the RMH (as long as we get a room) and spend the night. The next day they have his GJ placement scheduled and possibly blood work if Thursday is too crazy. Wow. That's a big day for ...

"This is not the end of the road. You don't want to see the end of the road...I have, and it's not pretty"-Dr. Ruldolf's response to me saying, "I just really feel like we are at the end of the road..." We're doing it (by we I mean Case). He's getting the GJ, this Friday. It's not the end of the road but the beginning of one. A new adventure. The GJ will help him grow. The food running straight into his intestines and bypassing his stomache means that it will absorb correctly. And if all goes well, the vomiting will cease, and Case will steadily and painlessly grow. This GJ will be put in at radiology while Case is awake. They will take the Mic-key button he has now out and put a new something (not sure what it is called) in. It will have 3 ports. One that feeds food to the stomache, one that feeds food to the intestines, and one to fill the balloon. If it gets ripped out, we can not put it back in. We will drive to Pittsburgh, and they will ...

Case has been on the new Pediasure Peptide 1.5 for about 13 days now. The plan is to take a 2 week trial on it before switching him completely. Here is a short list of the Pediasure Peptide 1.5 pros and cons compared to the Pediasure 1.5 he used to be on. Pros:  *Vomits and retches seem to be less then before (I think). Now he has around 3 to 5 (sometimes more) vomit and or retches in 24 hours instead of 7+. *It comes in a bottle instead of a can. Not a big deal. It is more convenient though. *He is not constipated any more and we stopped the med for constipation. Cons: *Diarrhea. That's a big one. If it continues, he will be switched again. It seems like every day it gets a TINY bit better but sill diarrhea like. So, That's that in the poop and Pediasure department, on to the "prayers". Something really cool happened today that I thought I'd share. Case started to cough and retch so Lainey (his 3 year old sister) ran to grab a towel. As yo...

I wrote this a few days ago and am just now getting around to posting it.:) Good day Case fans! It's a wonderful day in the land of All Things Case.;) Case weighs 14 pounds 3 ounces. He can "crawl" (or something like that:) the WHOLE WAY up the steps with out any help. Up until yesterday he only went a step or three, got tired and I would help him the rest of the way. He also consumed all of his morning calories by mouth! Big freaking deal! He did, however vomit afterwards but that's okay, at least he still has the desire to take food and drink by mouth. He was also fitted for an adaptable stroller on Thursday. If his insurance approves he'll get it. It's really cool and going to be super helpful. Not only will it have more cargo room and be more comfortable it will have an IV poll so I can properly run feeds and hang the vent bag. It will recline at the right angle to prevent aspiration. All and all it's going to be awesome and will make our long days ...

I've come to the conclusion that the schedulers at Pittsburgh Children's hospital have decided to collectively make my life as difficult as possible. I have spent countless minutes off and on the phone for the past three days trying to make 9+ different appointments in the next three months or so. I've been on hold, disconnected, called back, and transferred more times than I can count. I've experienced high call volumes, snippy operators, a "brief satisfaction survey" (yeah, those must be picked at random cause I was OBVIOUSLY not satisfied!! Ha) and one automated confirmation with the wrong time. Granted, all of this was easily remedied with with a glass of wine and more chocolate than mortally consumable.  I used to have the belief that if I said a little prayer,  asked for the right person, and called when Jesus wanted me to, I would avoid all the chaos. Not true. In the midst of all of this, I have been learning that life is littered with problems great...

Today was Case's second (and not last) surgery. I started to feel pre-surgery jitters yesterday. I thought his surgery was scheduled for 1pm today. About 6:30 last night the surgery department called to tell me different. Turns out his surgery was at 8:50am and his arrival time was 7:15. That meant we needed to leave home around 4:30am. Dan worked half a night then we headed to our second home. Once on the road I felt better. Jitters left, peace came. This special boy needs a strong momma and that strong momma (usually) is me.:) Every thing went great! The surgery totaled 3 and a half hours (crazy, right?). After surgery we talked with the doctor. All went well. Parts of what needed fixed are fixed and other parts will be fixed in 9 months or so. Could be 2 or more surgeries. Case was admitted to a room and is resting well. I'll tell you what, I fell even more in love (if that's possible) with this AMAZING boy then ever. When I took him back to the OR for anesthesia he w...

Case has his second surgery this Friday. This surgery is completely unrelated to the last. It will be the first of possibly 3 total surgeries to fix his severe hypospadias and other issues with his boy parts. It will require at least one night stay in the hospital. Although this has been scheduled for months, it feels like it has snuck up on me a bit. Time is flying, I must be having fun! Really, I am not nervous or scared but when I think of it I get butterflies. Maybe it's the fact that I'm not sure if it will be one, two or all three procedures and will not know until the surgeon calls out to the waiting room to tell us. I won't know how long he will be under until then. Maybe it's the fact that I'm excited (weird, I know) but I'm actually looking forward to it. Children's and the Ronald McDonald House have been our second home and I'm looking forward to going back. I'm praying for a quick recovery and hoping the pain is manageable. After all, I h...

So, Case had a cluster of appointments and blood work yesterday and today. We arrived at the Children's Hospital yesterday morning. Our first appointment was in the feeding clinic. We met with Dr. Belest (she is Case's new pediatrician here at Children's. Anytime he is having any kind of trouble or I have any questions I can call her and she can help me or direct me to who can.:). Case's speech pathologist, Heather, an Occupational Therapist, a Behavioral Specialist, Case's nutritionist, Stacy and an amazing nurse named Georgia (I LOVE HER!). The feeding clinic seemed very productive. They changed Case's feeding schedule to 5 tube feedings a day and no night feedings. I will run these feeds through his electric pump for 30 minutes each. I have a feeling some days it will feel like all I do is feed him but that's okay, it's my job and  I've got the best job in the world! It will be nice for Case to have a break from feeds through the night. We are als...

Christmas is a time of giving. A time of love, joy, peace and family. Last year Dan, the girls and I spent Christmas in the NICU and at the Ronald McDonald House. It was hard in ways being away from home but we were more then blessed spiritually, emotionally and materially. We enjoyed a meal of what ever our family wanted in the cafeteria bought by a family we never met. The girls got gifts that were donated the the RMH. Case got several gifts donated by organizations and families. There were many more gifts given to us and I am more then thankful. I was also given the gift of good fruit. Jesus was and is in me. It was glorious. Now, as I sit on my couch I'm not taking one minute of this beautiful Christmas or last for granted. I will never forget the blessings that flowed last year and am also thankful for Christmas at home this year.

I was out to breakfast with Dan and the kids this weekend and one of the servers (who absolutely loves Case) stopped to chat. As she was enjoying Case and high fiving him she asked about his size and it came up that we take him to Pittsburgh Children's hospital often for checkups. She said she goes with her daughter and grandchild who has Autism. The lady said that being at Children's is a great reminder of how good she really has it. Autism is not something her and her daughter had hoped their sweet child would have to deal with but to them it is manageable and could be a lot worse. She reminded me of a night towards the end of Case's stay at the hospital. I was in the cafeteria by myself (Dan and the kids were gone for the week so Dan could work and go to school) and I was feeling sorry for myself. I was tired. Done. I wanted to take my baby and worn c-sectioned body home. During my woe-is-me moment I saw a very ill girl, probably early teen years. She looked close to de...