Back to Baseline

Well, it happened. It had been almost seven years since the last shunt revision, so I guess we were due. We did have that trip to WI back in June, but we'll circle back to that. Tuesday, was a virtual day, I had to wake up Bub, and his exact words were "My brain hurts". After most of his classes, he spent the rest of the day sleeping or trying to sleep and rest in the chair. Wednesday, I got the call to come get him. Vomiting, headache, no fever...so we went to the ER. I knew I just needed pictures to confirm no hydrocephalus. The CT "was clear", but no shunt series was done. We left the ER with Ayden literally screaming, "I don't like large!" It did not settle, but I am not a doctor. Frustrated, I did some school work, but then I looked up the CT discussion on My Chart to find the they compared and discussed the similarity in size of the ventricles to June of 2023, the CT from the last middle of the night trip to Milwaukee because of suspected hydro. When I found it I talked with Justin and tried calling Childrens, but the office was on call service at that point. Bub was sitting at the counter when Justin saw a visual sign we needed to head back to the ER, his shunt tubing that runs down his neck has an obvious bulge/bump on it. This time they did a shunt series, and it showed there was "problem". We were told it was serious enough that Milwaukee was too far away. We had to choose one of the Indy hospitals, yes I asked about CC or Cincy, but we had to choose between Indy due to the severity of the issue the need to get it fixed quickly. That was around 8:30 PM... Justin went home around 10 PM to pack bags and came back...and we waited no vitals were taken past 11, an IV was put in, but no fluids started. Just Bub sitting in a bed...finally at 2 AM we asked what was going on because we thought he was going to get transported. The nurse came back awhile later to tell us we were ETA of 7:30 AM departure for Indy... Frustration, and a good knowledge of his patient rights led us to get him discharged so we could get him to Milwaukee before he would have even left for Indy. 

When we arrived in Milwaukee they didn't even take time to redo the imaging, we came with our CD, they did one quick shot of a particular angle they wanted, and put us on the OR schedule. He went into surgery within hours and was recovering on the 7th floor by mid-afternoon.  Verdict: shunt tubing broke in a few places from calcification, but also noted the anti-siphon device was not working properly. All of it was replaced that needed to be, but fortunately nothing was needed done deep in cranial cavity. 

1. We need to find a neurosurgeon that is willing to take on Bub's case because Milwaukee IS too far in an emergency.  Not that we haven't tried before, but we were already working on this just a few weeks ago and are hopeful for an appt. in March with a possibility.

2. We WILL ALWAYS do what is needed, even if it means getting chastised by a neurosurgeon for putting his life in danger. It wasn't the first time. Yes, we of all people know "he could have died". 

3. I think the mystery of last summer was the anti-siphon not working efficiently. So that little question is answered.

We made it home at 1 AM Sat., and rested all weekend. Ayden got up this morning but stayed home for another day. Jen stopped in to take him out for bit of rec therapy this afternoon, and I think it was good for him to get out. Tomorrow, we hope to be back to normal, well our normal anyways. The smile you see in the picture from this evening helps me to believe we are back to baseline.

It is his last basketball practice/scrimmage. He probably won't be really active but he can see all his friends. 

Thank you for all of the prayer warriors that kept us going over these past few days.  Answered prayers for sure. I am hoping that it is for a bit, we need to focus on a camp application, bowling season, and track soon too! 

Thank you to everyone who follows and supports our Bubba. 

The Hoffmans

Sweet 16!

Wow! Where did "Baby Ayden" go? So much growth and maturity. He can pick me up, and hold me. He can have real conversations. He knows what he wants and advocates for himself, like asking for a new phone often. He even takes the trash out without asking, does your teenager do that? 

That night, after the stroke, when the encephalitis had a hold of him and the reality of just how bad he was set in, I prayed for 5 years...Why? 5 who knows. My own foolishness thinking I could make a deal with God. He already had a plan. He already knew how much happiness Ayden would bring to this world. He knew there were just some people that needed Bubba in their lives, even more than he needed them. I just remember saying I wasn't ready to let go yet. I really didn't know what his life would look like, but if you know me, you know I never imagined this. He is a teenager, he stays after school for practice, teases with his friends, and he just got fitted for his letterman jacket. He is just so independent, when I drop him off at the HS he doesn't want me to walk in and if I do he makes sure I know that I can leave as soon as possible. So much teenager, but still my boy in so many ways.

I don't think he will ever outgrow birthday parties. We had his family party Saturday complete with a taco cake from the display case at Meijer. He has had his eye on it forever and he was so excited to pick it out and bring it home. We had the perfect weather for him to enjoy his new swing outside. At 5'11" he was getting a bit too dangerous swinging in his old one so he has a big red bench now...BUT he isn't interested in sharing in to be clear, ha! Tonight, is "Mexican with the robot!" We will celebrate his real birthday with dinner at his new favorite place to eat. 

Health...He is good. Have we seen some seizures like stuff recently, a bit. He is growing, he is working muscles afterschool, and he is being challenged at school. With all this change some electrical discharge is expected I think, but we will check in w/Neuro in Feb. just to be safe.

We are happy and blessed. He is 16!!! I know the next few years will bring some tough decisions and plans, but they now will be filled with some real high school memories too. We will be busy, but we are trying to soak up all the opportunities while we can.

Happy Birthday Bubba George! ❤️🧁🌮

Such a Great Summer!

 Where do I start? Maybe where we left off... Ayden was able to visit with Dr. Lew in Wisconsin the Friday before Camp Riley and the quick brain showed that the increased ventricle issue(that was found in the ER and remained status before we left Milwaukee a few days later) had resolved. No surgical intervention needed which meant "ALL CLEAR" for camp! 😁 He had an amazing time, and wants to go back. The only concern was they wanted him to communicate more, but I think his shy side probably trumped his first time at camp since 2018. We have no regrets trying it again and I am glad he still has 3 summers left to attend. In his words: 

I went water skiing!

I went ziplining!

I put a pie in his face!

Needless to say his smiles say A LOT!! 

Now to some very exciting news: Ayden is changing schools next year! He will be headed to Dekalb High School. He visited his new school on Friday briefly as we walked around he talked about it being a "big school". He is excited to meet new friends and enjoy a new experience. This will be a crazy year for us all as Nessa will finish her senior year at PH and I am changing gears just a bit to start a new challenge as well. Next up will be "the Big Fair" as he calls it. The one thing Ayden missed while at camp was fair time, but he will get his fill of ice cream, tram rides, and grilled cheese at the State Fair in two weeks. 

We ask for prayers for continued healthy days and a successful start with a lot of new faces in the coming weeks.  

He Keeps Us On Our Toes

When Nessa and I came home from church yesterday we found out that Bub decided to make Fathers Day extra special for his dad. Poor Justin had to clean up some big messes. According to Ayden George, "My brain hurts." He followed up that statement with some vomiting mid breakfast and spent most of the day just resting. Around 6 PM he started round 2, but each time he seemed to feel better and perk up a bit afterwards. No fever, had me thinking about his shunt so we headed to Parkview. Justin enjoys a good Father's Day at the hospital, certainly not his first. The ER worried me at first because the gal who checked us in said, " I am not familiar with a vp shunt, so like what do you need?"  Fortunately, we were blessed with both a great nurse and a fabulous doctor. They found that the left ventricle was enlarged from his previous films. The problem is they can't help beyond that. They would have transported Bub, but I preferred to take him. They wrapped his IV, and after stopping home for luggage we headed towards Milwaukee at midnight. We made it to the ER at Children's by 3:30 AM their time.  We have tested and waited off and on ever since. We are on the Neuro floor which is good but our neurosurgeon is on vacation this week. 

Bub has been Bub, flirting with people, laughing, joking, you know everything that would tell you he is clinically just fine, and makes us look crazy. He hasn't vomited since meds were started at the ER. Today the decision was to let him eat and see how it went. He has been great. 

Are his eyes sparkling? NO. 

Is he grumpy? Yes, off and on.

Is he tired and a bit unstable? Yes, but did I mention the no sleep thing. I think you have to keep that in mind.

They have confirmed the ventricle is larger than his normal, but the neurosurgeon assigned to him said she likes that better even though he is used to a different baseline/normal. He does not have imaging that shouts hydro like he did with his last shunt revision in 2017, so it is not an easy jump into surgery.

Right now we are scheduled for surgery tomorrow, but as long as the vomiting has stopped and he seems "ok" we may just head home and watch him. I like the latter of the two choices because surgery means no swimming for a bit during the hottest days of summer AND it could jeopardize his trip to Camp Riley in a few weeks. On the other hand, it was 11 years ago almost to the day that we were planning for discharge, his shunt failed, and he ended up in a chopper the next day. We will do what is necessary, but I have to be honest and say I prefer "our" surgeon make the call. 

Praise God I was able to drive through the night to Milwaukee without sleep! 

Our prayer focus is for the doctors to find the "right" answers and path for Ayden George. Sis is in Lafayette right now and Justin has to be home for the horses and work, so also pray for both of them as it is hard not to be here with us. 

I hope to post that we made it home by tomorrow evening, but we will see. 

Thank you all for the continued prayers for Bubba George. ❤️🤍❤️

Balancing Bubba's Needs

This year Ayden decided to try ice cream again.   
He now LOVES IT!! 

 It has been almost a year since the last update. Like we always say no news is GOOD news, and it has been. Ayden has been growing and staying healthy too. We have had some minor concerns, and tried to balance our worries with reasoning, and then of course I am always trying to schedule appointments over breaks versus more days off. 

Neurologically speaking, there has been something off for a bit now and we don't know what it is. We had a bit of a scare in Sept. as he woke disoriented one morning like he perhaps had been seizing, within a few weeks we started to notice his eye drifting off and I reached out to our neurosurgeon in Indy. This led to some quick imaging, a bit of a scare, and then some unsavory truths that required us to re-establish with Wisconsin Childrens Hospital in November. The good news is his shunt appeared to be ok and Dr. Lew and staff welcomed us back with open arms.  They helped us find a new neurologist we met with over Christmas Break(She is amazing!). We really only left Milwaukee to avoid the 4 1/2 hour drive, but we now know it is worth every mile for Ayden. A very quick EEG showed we still have activity, but that is why he has his med and will continue to need it. Unfortunately, the wild goose chase ended with no answer for his eye wandering, but we are happy to be in good hands again on a neuro front. Our Low Vision Appt. in March was rescheduled due to illness so no answers or direction on his eye. I went ahead and set up an appt. with IU Ophthalmology next Monday, hoping for an answer or direction from them as waiting until June for our rescheduled Low Vision appointment is just too long.

Ayden loves to play Sorry! (Simon version)

On the academic side of things I wish I could report happiness and success, but I can't even tell you his teacher's name because he doesn't have one(except on paper). For a kid who knew his letters and sounds at age 4 , "Letter of the Week" curriculum with tracing/coloring sheets in eighth grade is beyond absurd, and inappropriate. We just try to remember he is happy to be surrounded by his peers and that is something we can't provide. He truly LOVES his friends, so we will find joy in that fact and tackle the rest in good time, hopefully before boredom becomes behavior issues.

Two very bright spots are rec therapy and now music too! Ayden continues to love his time with Jen, his rec therapist. They enjoy racing, going to the movies, and of course SWIMMING!! Jayde is our newest addition as she comes to the house on Friday afternoons to sing and dance with Bub. He loves every minute, it was worth trying for a few years to get a music therapist added.  

Last Wednesday, we followed up with Dr. Carpenter who has been doing Ayden's casting and botox for both his left leg and arm. Within just a few minutes, our follow-up appointment turned into a surgery consult with a new surgeon. The botox and casting started last April did make a difference and allow him flexibility to grow 10 cm in the 12 months since, but more intervention is needed now. Dr. Bellflower will be transferring tendons on the leg and arm next week. Ayden will have surgery on Thursday, and then be in casts for about 5 weeks. This is not a surprise for us as it is common with Hemi kids. Dr. Carpenter said we should be glad that we were able to wait so long as it has allowed him to grow without having to redo the procedure after his growth spurts. We want to do everything we can to keep Ayden walking and moving without pain or fractures. Most important to us was making sure we could get it done as soon as possible because we want our boy to be able to swim all summer. I have been VERY worried that we would not get the surgery scheduled until June which would mean another rough summer and weight gain. The extra bonus of next week is having Good Friday to allow me extra time to be with him after surgery without taking even more time off work. Hopefully by the following Tuesday he will be ready to go back to school.

Ayden enjoyed a little walk around the zoo
 after his appointment last week

I mentioned finding balance(ya know up there in the title)... There is a saying that goes "Anyone can handle a crisis, it's the day to day living that wears you out." I think that is where I am. I want to be a good mom, I want to do what is best for Ayden, always. However, what is "Best for Ayden" sometimes keeps me from being able to do my best, or participate in other areas of life. What is "best" depends on who you ask, and ultimately we have to make the decisions. Can we just drop everything EVERY time there is a concern and schedule the soonest appointment available? Yes, we could, but then what? Because there isn't always a clear answer and sometimes we just have to wait it out. I could quit my job to provide the education my son needs, the medical attention he needs, but what about his friends?  Have you met me? I am not stay at home material, I would drive all four of us crazy, no thanks. For now, I just have to do what I believe is best, and hope I can balance everything in between. 

Oh and I can't end this post without mentioning an addition to our family these past few months. Sis is now old enough to date, so as a new face has been around the house I have enjoyed the moments when I see three kids playing Ayden's favorite game, Sorry!  They shoot hoops in the barn and jump on the trampoline together. Of course picking up the Nerf bullets is almost a daily task now, but we have been blessed by a young man who embraces Bub for who he is, that is a blessing. 

As a family we want to thank everyone who asks about Bub and keeps him in your prayers. He is a not so little(officially taller than me now 5'8"!!) warrior with a kind heart and a love for life. 

Making Progress

Back in January we added a new Dr. and created a plan to keep Ayden walking and get his left foot back on track. We started on April 23rd with Botox, then his first cast was put on last Friday. He did very well right up until the end and was fine afterwards. I think it was more about being on his belly than in pain, he has never been a tummy time boy. The best part for him was that mom let him pick the color he wanted so PINK it was ...lol! 

Yesterday, we took him to Indy again for a new cast. Justin was smart enough to charge Bub's iPad(which is almost never charged and in Ayden's hands anymore). The iPad was a long lost friend that kept him occupied while they cut off the cast. We had to wait a bit for the orthotics casting/molding, so he got his lefty foot back for a bit.

He did really well for that casting of the mold, and when that was done is was time for cast #2 a bright yellow one. 

More importantly, Dr. Carpenter was very impressed with his progress and felt like we should only need two more weeks of casting, YAY! Hopefully, on the 21st we will saw off the last one, and go home with his new brace too. 

I have honestly been so worried about handling all of this, but he is doing so well. Super proud of him and thankful for family that has made these trips more fun...see picture below: (Uncle Dana may be spoiling him a bit, while mom gets in some Huxley snuggles too!)

Reality Check...

Sometimes life gets so busy and we move so quickly that we forget things. This school year, I vowed to be a better mom for Ayden's sake. I was going to plan at least one PT session a month for Bub. Yes, for my fellow SN moms this will seem like a gross neglect, but given Ayden's school schedule, my work, and our proximity to quality therapists, weekly appts have never been something we could do without A LOT of extra help. I was NOT going to avoid putting everything off until a school break or day off. If an appt needed scheduled, I was going to do it. So far, we have done pretty well he has already gone to to see Julia each month this school year and will see her in a few weeks again. He has had a round of Botox and a dentist appt too. That has all come with guilt, as subs are hard to come by right now, and I fully expect to use all of my sick days this year.

 Unfortunately, the unexpected has happened a few times this fall. Our pediatrician's office closed in Sept. We have no "quarterback" on the team right now. No one I can call for the next play to send us in the right direction. Someone who knows Bub and all his little quirks. We have been playing with fire a bit and after this past week, we know it needs to be handled. Next Tuesday, we will re-establish with his family doctor and hope for the best moving forward.

Last Tuesday, Bub came off the bus unable to walk. He would not bear weight on his lefty foot. We took him to the ER for x-rays and had the typical ER experience; We left with speculation of a possible sprained ankle and he stayed home with Grandma for a day. He walked ok the next day, and made it through school. Jen, his rec therapist, even took him for a short bit on Thursday being mindful of his injury and not pushing him too hard.

Yesterday, we met our new orthopedic surgeon at Peyton Manning Children's. We hope NOT to have to see him anytime in the near future. However, he was wonderful and we look forward to having him on our reserve list. He checked his hips and he is good! This is a huge relief, and we are thankful. He took additional x-rays, but used the film's we brought from last week (from the ER) to show us the fracture in his foot. He also took some additional images to show us how nicely his fractured leg had healed!?!..Yep, apparently he broke his left leg at some point and we had no idea. In hindsight, as he showed how it changed his ankle structure it made sense to us. After all, his "Funky Foot" had started to really look funkier in the past year or so. We can't really figure out when/where this happened, but we have no plans of stopping Ayden from being a kid. His mobility and independence in the past two years has grown so much. He is more like a typical teenage boy everyday.

Dr. Wilhite said we do need to follow up and get established with an additional doctor to manage his CP better (therapies, botox, etc.). So we will head back to Indy in January to meet with Dr. Carpenter and see what she has to say. 

For now, we are going to get fitted for new orthotics, visit with our neurologist, and of course check in with Julia at PT over Christmas Break.

What we know is Ayden really does have an incredibly high pain tolerance, if he says something hurts, believe him. He has proven this time and time again, after all this is the kid that was teasing and laughing with the nurses and doctors before his appendix was removed. He rarely shows clinical signs of hydro, and has only actually had a fever a handful of times in his life. 

On the brightside he is tolerating the new boot, we have 4 weeks to go with it so he will be done in January. He is not a fan, but it is not really slowing him down. He has a new friend Fred the elephant...Yes, Mom guilt hit hard yesterday, and so I spoiled him. Oh and this...I am going to try to stop feeling guilty about times when everything needs to stop and I need to just be mom, like right now. As this is the view on the couch next to me...

Happy and Healing!

We have been home for over a week now and Ayden is really pretty happy. He sleeps until 10 AM if we let him, but maybe that is the normal 12 yr old on winter break in him. 😁 He still needs the occasional nap on days that he is more active, but I think regaining strength will take time.

We went to his previously scheduled "well child" appt. on the 30th. It was a good follow up and while we don't have all the answers yet, we have a few indicators. His immune panel revealed no residual effects from his vaccines. Basically, his body looks like a nonvaccinated child. So he got a few shots and we will redo the panel in 6 weeks to see how his body responds. None of this is really surprising, afterall our whole special needs journey started with HSV encephalitis at 7 mos. We were reassured that the HSV would not flare again by so many doctors, and then...it did, at age 2. The crazy thing about all of this is Ayden is always asymptomatic until whatever it is gets so severe that it needs immediate action. As a mom it puts me back on high alert, something I have tried to move past for years now. I knew when we left the ER that Friday morning they were wrong, and they were. I have to go back to trusting my gut and be "that mom". 🙄 Our pediatrician reminded me I have his cell, and need to call him. I reminded him he was supposed to be on medical leave at the time. Thankfully, it was his management that Saturday night that got things rolling in the right direction. I would feel better if I knew for sure the antibiotics he is on will work and it won't come back. We don't know the cause of the pnemonia so that doesn't help either. I know it is common not to know, but I am hoping the new chest x-ray next Thursday and follow-up with the surgeon on Friday will show the improvements that put my mind at ease. I plan to get back to work, but Ayden will not go back to school until next Wednesday. His IV antibiotics will finish Tuesday AM and the Home Health will remove the PICC line and discharge him from their care that day. Grandma will be in charge for a few days with Daddy popping in if he can. Unfortunately, this is not over as there are still questions, but clinically my ornery little booger is back, with a smile of course. In fact, to add stress I had to email our neurosurgeon this AM because the doctor and his dad both noted his shunt tubing protruding. It is, but fortunately the Neuro team is not concerned.

They said the weight loss from the hospital and growth spurt probably just have us noting it more than before, but they said they loved his smile in the pictures. 😁 We do too! Thank you again for the prayers, follow messages and texts. We are almost back to our normal. 😉

Waiting for Discharge

Today is the day! We are waiting for discharge and hope to be home before lunch. We will meet home health there to get everything set up. Ayden will have his PICC line for the next couple of weeks and continue his IV meds. Hopefully, he will heal even faster at home. I know he will be more comfortable and he can see his tree and lights. I was able to go home last night with Nessa Bean while Daddy took his turn to stay the night. We stopped at Walmart and got everything for meals. It will be a Christmas from the Walmart frozen food section, but it has to beat hospital food! 😁 And maybe we can find time for some cookie and chocolate making later today or tomorrow. The key is we will be home together for Christmas. Thank you for the prayers over this past week+. We appreciate all the kind thoughts and gestures. We hope all of you have a Very Merry Christmas!

The Hoffmans

PS- We found the green tractor(w/lights and sounds) 😁 Sis is wrapping it up today. 

Closer to Home

Although the x-ray yesterday morning still did not show improvement they moved Bub out of PICU. His care does not require the PICU anymore and he was happy about the change. He still has his chest tubes, but just like the past few days there is very little to no drainage. We have also been off of oxygen for almost a full day! Our pediatrician wants to get Bub home ASAP. There is a reason for that, Ayden's history tells us that when Ayden stays in the hospital over a week he actually starts to deteriorate sometimes with no explanation at all, it is just him. We were admitted last Saturday, so we hit the over one week mark last night. We have a PICC line so our doctor knows once he has his chest tubes out he needs to be pushed home. He will rest better, eat better, and overall be happier at home. We have handled IVs at home a few times before so that does not concern us. I went home yesterday for a bit to clean, sweep, and feel ready for his arrival. Our hope for today, chest tubes out, more improvement, and talk of an actual discharge date versus "before Christmas". As long as he is having a good day, Gma is coming to sit with him for a bit so Justin and I can finish our Christmas shopping(something we planned to do last Sat.). We thought we had Bub taken care of, but when nurses and other staff ask him about Christmas he tells them he is getting a green tractor?!? So we will be tractor shopping today for sure, he never mentioned this before. 🤷 Yes, he may be spoiled, and that is ok.

So prayers first for all the little ones that are flooding the PICU and peds floor. Prayers for families as they learn to navigate a hospital stay for the first time and at the holidays to boot. Then, we ask for prayers for Ayden to continue to improve. He needs to eat more, be up more, and not go backwards. We want to get the chest tubes out so we ask for comfort through that process. Our goal is still home by Christmas, which may not be on the 25th for our family. It may be celebrated as soon as we get home, he is so afraid he missed it already. Thank you for all the kind notes, cards, and messages. They have all been appreciated. 

Thank you,

 The Hoffmans

Waiting for More Improvements

I have had some ask for an update so this is what I know. Positive notes were that he sat in a chair for a bit twice and took a quick walk. He also asked about home and stated several times that he wanted to go. This is good because he showed an interest in something and talked a bit. Some elves delivered fun notes and yummy treats last night. I showed him the new ball and he reached for it and held it. I asked him what its name was (he names every ball he owns)..."volleyball" not the most creative, but it was accurate so it is what it is. He has slept a lot, and still has pain, but managed to eat almost half of a PBJ sandwich and one whole Chips Ahoy cookie at lunch time; After not eating for a whole week, we will take it! Speaking of which he has actually lost two rolls on his tummy, for real! lol! Also, having an upset tummy led to the disappearance of George for a bit, but fortunately he requested Lucy from home the day before and she has been here to help out.
 I wish I could tell you his chest x-ray looked better today and they took out his chest tubes, but it wasn't. So specifically, we need prayers for a good night of healing, our hope is his activity today helped clear out the lung so we can start the transition from suction to gravity, and then to removal of the tubes. We would like to see him breathing well enough not to require the oxygen. We keep trying, but it tends to fail when he is sleeping. Also, if we could eat like we did at lunch today some that would be helpful too. Those are our current obstacles to move past.

Let's end with a happy Christmas memory... Nessa has has struggled with wanting to be with us this week. She has been at the hospital later than she should be a few nights and yet made sure to get herself up and to the bus even on a few cold mornings. Luckily, she had something to look forward to at the end of the week. Mike volunteered her at the last horseman meeting to drive Santa for the elementary school. She has never loved something as much as she loves drafts and getting to do her thing for such an awesome event made her feel so proud. She told me tonight, "Mom everyone knew I was driving." So I had to admit I asked "everyone" to take pictures since I had to miss it, and they did. This evening, off and on I have received pictures from friends. It has really made my evening, Thanks!

UPDATE: :) So I started this about 9 PM...when Bubba was practicing his roll as the marshmallow man for the next Ghostbusters movie - Fortunately, the issue was addressed and although it has consumed the last few hours, I am happy to report his swelling is going down. YAY! :) Maybe this is the start to a great Saturday. :)

Thank you to everyone who helped out, has sent a note, and most importantly prayed.
We will make it home for Christmas! - The Hoffmans

Home for Christmas

Yes. It has been two and a half years since the last post... Things have been amazing! So many milestones met, and yet we have been so busy that I haven't taken the time to celebrate them with a post. Seriously, everything has been looking up. This blog, just like Ayden's CarePage from over a decade ago(yes, I did say a decade), was created to keep people informed. It alleviates the stress of individual messages to the masses. It also allows people who don't know us well or are just curious to learn about our son. Truth is I still do not have nice short answers to questions like "What does he have?" or "What is wrong with him?" My answer is always messy and longer than anyone really wants to hear.

So fast forward to tonight. I am sitting in PICU with Ayden. Our goal - Make it home by Christmas! We haven't shared much, but the word is out and we honestly need some prayer warriors, and the more the merrier.
Last Friday, Ayden woke up screaming in pain. We took him to the ER where he sat for a few hours and went home with the diagnosis of constipation. Yep! There are some of you that will laugh about the old family story that goes with that one. Anyways, despite leaving the ER as uncomfortable and screaming as when we arrived, we took him home. At the time an elevated white blood count was noted, but the doctor said it was not worth the time to chase down the source of that.
 Nothing changed, Ayden cried "No more large" and tried to sleep in between screaming.
 On Saturday, we returned to the ER and they admitted him for observation due to his chest x-ray. We have been at Parkview every since. Fortunately, our team is in charge and they have been looking at everything. He just is not himself at all, and truly is in pain. On Monday, it was decided that his left lung was too full not to do more than antibiotics. Tonight he had a VATS procedure to drain his lung and get a good look at what was inside. Samples were taken for cultures and further examination.
For the next few days, we could use some prayers for answers and strength. Ayden will be in a lot of pain for a bit, but our hope is to talk discharge within 3-5 days. They placed a new PICC line yesterday, so we can hopefully just come home with IV meds like we have done before. We know Bubba heals best at home, our team knows that too.
My hope is our next post is of an amazing little guy opening his gifts on Christmas morning.

We are thankful for all the thoughts and prayers,
The Hoffmans

Blessings

You all know I struggle to post when things are going so well, because I fear that we will hit a downward spiral quickly. However, today is June 16th... 9 years ago my son almost left this earth. In hindsight the fact that we had a room full of nurses and four doctors in his room should have been scarier than it was at the time. When our ID doctor told us to go sleep he wasn't leaving the station outside Bub's door, we should have known. We were lucky, we really never grasp the gravity of it all at the time. I remember sending away the social working who wanted to get Ayden all signed up for his disability paperwork. I remember thinking -  My son? He is so small?(ok, young, lets face it Bubba was never a small baby) He will get better. Fast forward to 5 years ago, after driving ourselves to Cleveland (because neither of us were allowed in chopper that flew Bub there) we spent the whole night at his side only to see him crash in front of us again. Again, we watched and waited to see if he would stay with us. That time was tougher because we did know just how bad it could get.
Fast forward to today, there are still moments that can bring me to tears: holding babies, seeing his preschool mates doing amazing "normal" kid stuff, watching families with 9/10/11 year olds go on fun trips, or hearing the sound of Sam in the air or sirens on the road.
However, despite it all he is thriving, so enough of the sappy stuff!

As summer break has started we are hearing phrases(that we say) coming to life more often. One of my current favorites "Really Ayden?" I cannot count the number of times I utter that phrase. We saw Julia, his PT for 7+ years, yesterday and she said he was doing well. His shoulder is dropping again so perhaps taping again in his future, and for the first time ever she could not move his left foot. He was significantly struggling with his gait about 6-8 weeks ago and I tried to get in to see her then, but schedules didn't work. We scheduled another visit next week to see if his issue is a fluke, I am hoping so. I also now know how to navigate the system to insure she sees him when we need her to. In her words, when we call it is important and she wants to get us answers. We have some 3 days in a row mini intensive sets this summer as well. Her goal is to start working on running...funny thing is Ayden came outside yesterday yelling "I did it!" meaning he learned how to unlock the lock on our backdoor. Great! Just when I started to think I could relax! lol!
One thing I have been meaning to write about for quite sometime, like maybe a year or so is our church. We have been attending Stroh Church of Christ for about 7 years now. We used to be able to drop Bub at the nursery like normal parents and they even let him stay with the younger kids versus the preschool children because he seemed to do well with some toys and space, and he still needed to be near the diaper area. We were able to attend as a family together. Then things changed, Ayden changed in between the surgeries, procedures, medicine changes, and everything else, church just wasn't something he could do. So for many years it was just Nessa and I or if the kids were with gma, Justin and I could go together. About a year ago, our church reached out to us and asked how can we help. We worked together on a few things and now this is what church on Sunday morning looked like for us. We pull in about 9 AM and walk in a few minutes after that, but before we get to the worship center, there are already people pulling chairs from the wall and creating a row just for us in the back closest to the door, with space in front of us. This has been such a blessing! We have been able to attend church as a family again. Are there days that Bub is not up for the challenge, yes. On those days he stays home with daddy. This welcome happens every time we come, even when it was very crowded on Easter Sunday they made a spot for us. Last Sunday, Ayden was swearing before we even got to the sidewalk, he was off, and we questioned whether to go. We did, and he didn't want to settle at first, but then danced with Georgo(his Curious George) and continued to do so even when he should have been sitting down. We tried to get him to sit, and then a tap on my shoulder came. One of the men from the church who had watched Bub for a bit said, "If he wants to stand and have his time with the Lord, let him. He has a connection with God you will never understand, it is beyond you and me." Yep, a tear or two fell, but he was right.
After great visits with Julia in Fort Wayne I question why we live where we do, it is so hard to get Ayden what he needs, it always requires A LOT of driving and time. Sunday, I was reminded why we live where we live, because that church 5 minutes away, doesn't care that we come late, they don't care that he needs his space, they welcome us and they are apart of what makes where we live our home.
One more blessing, June 16th does not have to be a sad day anymore, our Nessa has chosen to be baptized today at camp. That little, not so little anymore, always finds a way to make things better. Now she is taking this ugly day and making it a day of blessings.
 He has a plan, we just need to trust in him.
Thank you for keeping our little family in your prayers and thoughts, we are doing well.
 The Hoffmans

Ayden is Amazing

I struggled with the title for this post, yet had to move on quickly because I am excited to share with EVERYONE our great news. So "Ayden is Amazing" works because quite frankly it is true, unfortunately we have found a few people in this world that never really understood that. Ayden had the chance to love school again, briefly this year. How did we know he loved school? He shared HIS work explaining how HE did it and what he had done. He did not fight with me to get on the bus, and did not seem to need to decompress from his day.  Unfortunately, that time expired and we needed to find a solution no matter what the cost.

 Ayden will be moving out of his current classroom and school and into a class at Meadowview Elementary for the 2017-2018 school year. We are beyond excited to start this new adventure; Ayden has had many good memories at Ryan Park, but needs a change. We met his new teacher today and he is great, I am literally smiling this whole time...you have no idea!! It will still be functional skills (that will not change), but the district wide focus on technology, virtual learning, etc. will not be a problem  as he will be in the Westview School district, and our school calendars more closely align too.
The cost...we will lose "Deb and Vic", his bus driver and monitor since he was 3 years old. These two ladies have been a blessing to our family in so many ways. They truly love and care for my boy, they even have their own jingle we sing almost every day or night.  I am not sure that taking the bus the first few mornings next fall will be easy, but I am hoping what he finds in his classroom will make him want to try again the next day. We were terrified about Camp Riley last summer and the boy that returned was different, older, more independent. Ayden is growing up and changing each day, I can't wait to see what this new adventure holds for him... Ayden is Amazing.
I'll post soon about our summer happenings, he has already been on several bike rides, the pool is ready for swimming(once the weather cooperates), Julia is on the calendar, and then Camp Riley will be upon us before we even know it.

Shunts Fail. It Happens.

So it happens. Shunts fail and that is a pain. Sometimes it scares the daylights out of us, and sometimes it is just another surgery. This time we knew there could be a problem and there was. The element of surprise didn't get the best of us. 

Finally relaxing today

Backing up to November for a moment, we took a trip to Washington. Ayden had never flown before, and flew 6x in a 3 day period. Along with a crazy sleep schedule and time change he did not travel well. As we were landing in Detroit, Ayden had a very long cluster of seizures like he used to have. Fortunately, within about a week he seemed to get better. However, we started to see breakthroughs over Christmas Break, they changed from every few days to daily, and then from once to a handful/day. Meds were adjusted a few weeks ago and it seems to help for about a week, but we came to WI this time knowing he was seizing daily. Our appt. yesterday was just a routine 6 month check, but we had an MRI planned for a good baseline with his new adjustable valve shunt(from Dec. 2015). I have never really been very good at understanding imaging, but even from across the room I could easily see the difference, it was hydrocephalus.

Our Superman

Today he was scheduled for ventricle endoscopy and then shunt replacement. A quick check of the shunt's valve proved that it was not working. With this obvious problem the neurosurgeon did not see a need to be more invasive and explore the ventricles. Less invasive means quicker recovery, but to insure that we have fixed the problem we will have new imaging in the morning to make sure that the shunt is working and the fluid is draining properly. It may or may not clear up by morning, but we should see progress. If he is happy with the images, then we should be discharged to head home tomorrow. We will take our time, past experience with revisions has taught us to be cautious. I cannot actually count the number of times Ayden has puked on I-80/I-90(both directions). We will have lots of clean clothes ready, and we will take lots of breaks. Hopefully, we will bring a happier, healthier Ayden home soon.
As always thank you for the prayers, they are always appreciated.

Success!

Ayden stayed all week long, and LOVED it!!! Camp Riley was a success beyond any of our expectations. The camp does a great job of tracking and recording everything. Believe me I have been through all the paperwork looking for indicators of some tough times, but NOTHING!!! It is all 4/5s(5 point scale). They even wrote how much they loved his excitement and can't wait to see him next year. When we(Mami came with me as per Bub's request) arrived the staff greeted us several times with, "You must be Mami, Ayden is so excited to see you!" as we walked towards his cabin. Yes, both mom and I wondered if that was good or bad until we saw him. He was so excited to share everything with us, he even stopped and hugged a friend goodbye. He "booped" one of the counselors on the nose and all of the sudden the others said, "Oh, we are booping", then they got in a line to play the game. When we first asked him if he wanted to go back to Camp Riley he said no, but he was tired and ready to come home. Now he talks about it and will say "yes" when I ask. We even started saying "next year" to get him ready for next summer, when we will all enjoy the time even more with less worry.

 They did write that when trying to communicate they would give him the phrases "I want" or "Can I have" then he could tell them. This is opposite what we have been doing for years because we wanted him to put the phrases together at all times. However, in his moments of frustration it has worked for us too! He is more likely to listen after he has said what he was wanting first and foremost. Before he would tire after trying to say the whole phrase when frustrated, and then you would lose him. He is capable of the whole phrase or sentence in normal instances, but when a squeal or whine has replaced communication this remedies the situation quickly. Again, we cannot thank the wonderful staff at Camp Riley enough. These individuals are well trained, compassionate, and dedicated people that helped our son gain more independence and feelings of success.

They loved HIM, and it made all the difference in the world.

 

Nevermind the speedo look. :)
 Here is his tape on the left leg, it is a lot!

The week after camp we started back with PT with Julia. She helped by starting a taping program to work on his his foot. We had just bought new shoes for Ayden a week before camp, when he came home the heel plates were already worn off! He has been wearing out the heels in his shoes for over a year so we thought the plates would buy us some time...not so much. Julia thinks by trying to bring his foot in he will stop pivoting on his heels as he walks, and maybe stop wearing through his shoes as fast too! The only problem is the taping will have to be done consistently for 3 months at least. I am hoping he tolerates it for that long. The success of these two mini camp intensive weeks are undeniable. We already have another week scheduled for October during Ayden's fall break. Then we hope to fit some days in at Christmas too.

On the medical side of things... We have seen "seizure like" activity for a few weeks, but there are lots of factors to consider. First, his Lamictal was very high and was decreased slightly right before camp, and he has been very active which mean he gets tired. Second, Ayden has double ear infections, and yes there was a celebration with this verdict at the doctor this week because it is the easiest answer. Unfortunately, his last set of tubes are both out now, so another set is probably a thought on the back burner if he continues to have ear infections like in the past. Ear infections could be causing the break through seizures and also a pain response that may mimic his myoclonic activity. Basically, we are not too worried about all this. We will be headed to Wisconsin to see our neurologist again in August, so we will wait a few weeks and see if the activity disappears. Then Dr. Hecox can decide the course of action from there.

So all in all great news for the Bubba. Now, we have two easy weeks ahead other than rec therapy and respite we have nothing major planned. Of course, Ayden has not gone a day without putting his suit on so swimming will still be on his agenda each day. He even made the Camp Riley video with his swimming and diving skills. :) https://youtu.be/bgjnje2puF0 (He is right at the begininning a couple times).

 Thank you all for the many prayers for a successful week at camp. They worked!

Now we pray these infections clear up quickly and no one has to utter the "s" word again for awhile. :)
Thank you to everyone that checks in on our Bubba, and prays for his continued strength and healing.


____
Ayden can still accept tax deductible donations for his Camp Riley experience until Sept. 1.

Riley Children's Foundation/Camp Riley

Attn: Camp Coordinator

30 S Meridian St, Suite 200

Indianapolis, IN 46204-3509

To make a donation specifically towards Ayden's Camp Riley Fee you can simply put "Ayden Hoffman- Riley 1 - 2016" on the memo line.

No News is Good News

I should do better at keeping up on Bub's blog, but as always no news is good news. Actually, no news is GREAT news! I haven't written since Christmas and although we have added some new friends to Ayden's team, he has been healthy and SEIZURE FREE! :)
 Ayden had a rough school year with an inexperienced teacher. However, that was a blessing in disguise as we met two incredible advocates that helped us to feel more confident about his education than ever before. They also introduced us to Dr.Penning, and we met with her again today for a follow up from spring break(yep, we still rock spring break w/appts.). Our goal with Dr. Penning is to help Ayden communicate more. Many times he gets excited to share and talk, but beyond the basics he becomes frustrated and shuts down. Our old goal was to get Ayden to communicate his BASIC needs and he can. Now we want him to work on communicating more with questions beyond requests and thoughts beyond memorized responses.

Our favorite PT, is one of the most exciting parts of Bub's summer so far. When I told him we were going to therapy to see Julia on Monday(2 days before school was out), he told me he was "done with school" and could not wait to see her. He has already completed one week of PT "camp" as we have nicknamed it. This summer,  Julia was willing to try seeing him daily for a full week in June and July. The benefits of the new strategy will not be measurable until we return in July to see if he is back to baseline or if he retained any of his skills gained in June. He has a new "trick", he is kneeling! He will show people how he does it for little bits at a time. It is the key to gaining more muscle in his backside, so we are trying to keep him excited and working on doing it for longer periods of time. Our short term goal for July is potty training, we shall see. We have started him with "peeing on the flowers" and he actually just asked to go do that prior to his bath this morning. Yep, it is a benefit of country living I guess, no neighbors to worry about. Silly? Have you tried lifting a 90+lb boy onto a toilet seat several times a day for the past year?? If we can get him to stand while using the restroom at least the physical strain will be a bit less for us and would not require undressing him as much each time. It has to be all on his timing and we have battled too much, he has to want to do this so we will see.

He has already had a pretty eventful summer, with much more to come. We drove to Florida the second week of June, and Grandma, Aunt Holly, Mitch, and Eden all flew in to join us for a family trip to Disney World.  After meeting Mickey Ayden was able to try boogie boarding, it was quite a workout trying to keep him up on the board! He LOVED the ocean and I think could have sat in the sand and let the waves crash into him all day long. One thing he learned during the 40 hours in the car over vacation was how to be a backseat driver. He now will help me out as I approach intersections, "I think it's that way mom."

Next up - CAMP RILEY!!! We went and visited Bradford Woods in May at Newcomers Day to check out the camp. Justin and I both left very nervous, and I am not sure that has changed much. However, some of our most trusted friends/advisors on all things special needs have recommended and talked about Camp Riley for years. This will be his first time as he is finally old enough to go. Is he ready to be away from mom and dad for 5 days(yes, I said 5!!)? Is mom ready? I don't know, so I guess we will find out! Your prayers for a positive experience, great weather, and a healthy boy are all appreciated.  He will go on Sunday and if it goes well we will picked him up Friday morning. I hope to update and post with great news at the end of next week, like I said prayers are appreciated!

With Love, The Hoffman Family :)


Interested in making a tax deductible donation to Camp Riley?
You can mail a check to:

Riley Children's Foundation/Camp Riley

Attn: Camp Coordinator

30 S Meridian St, Suite 200

Indianapolis, IN 46204-3509

To make a donation specifically towards Ayden's Camp Riley Fee you can simply put "Ayden Hoffman- Riley 1" on the memo line.

Home with Hope

We made it home last night from Wisconsin. Ayden is not cleared for school until Monday, but fortunately for him he has two weeks until Deb and Vic pull into our driveway again. It allows us to keep a close eye on him over the next two weeks to see if this change works.
On Wednesday, the surgeon went in prepared to replace the whole shunt if needed, but there were no obvious defects or issues so his valve was changed from standard med flow(1.5) to a programmable valve. His valve is set at .5 now so there is more fluid being drained our hope is that this will help. It is a bit of a guess and check system so time will tell. If you asked me right now if I feel like it is working, I would say absolutely. However, there is risk of overdraining so we are keeping a watchful eye for headaches and other signals as time passes. This morning I have watched him wake up happy, WALK everywhere this morning - No Scooting!! He has yet to come and sit on the couch, this for me is HUGE! I will feel better after we watch this continue for the next week or so. I am reserved in my opinion as I know Ayden always has what we call a placebo effect post hospital visits. He is always happy and relieved to be home, not that we can blame him. Our next visit is a follow-up on Jan.6, if needed. At that visit the shunt could be adjusted again if we feel we are not at the right place, but we can also postpone it if we feel like it worked(fingers crossed). Time will tell, and I hope this is the answer we needed.
I hope that we can relax and enjoy the holidays. It is amazing what a trip to Ronald McDonald House and a large children's hospital in December can do for your heart. We are so thankful that we are home with a healthy kiddo. The RMH house was amazing, this is the first time we have stayed in Milwaukee at RMH and we are hoping it was our last. I cannot say enough about how amazing RMH charities are for families, if you ever have the chance to support them in any way, please do.
I am hoping this is our last post for awhile. We didn't do Christmas cards this year, I have yet to get the kids' gifts for teachers, aides, and bus drivers, and I am just going to have to plan to mail gifts to my colleagues. I really thought I would get it done before we left on Tuesday, but we ran out of time. There are half made buckeyes and oreo truffles, sugar cookies uniced...I just had to admit defeat, and stop.
This trip was different, we were rolling the dice, and taking risks. I was honestly so afraid of being wrong and having something go wrong. We are home for the holidays, and that is what matters. To all of the friends we have forgotten, lost, or just plain ignored please know you are not far from our hearts and minds. You are never taken for granted, even if you feel that way at times. Thank you for the continued prayers and support. We pray this works and we see more of what I see today from Bubba everyday.  Merry Christmas!

Headed in the Right Direction

Ayden had a chance to see his Parkview PT over Thanksgiving break. She noted his loss of gross motor

function and fatigue since July, her opinion and report are important as we work for a solution. Our neurosurgeon made time for us on Thursday morning. He wanted to talk with us and see Ayden in clinic. Bub and I headed to Wisconsin Wed. night and talked with Dr. Lew on Thursday. He said the imaging is not showing an obvious problem with the pressure/shunt flow. However, the problems he has had, gross motor loss and fatigue have been constant since July. Both his pediatrician and his neurologist have done their jobs, eliminating the possibility of other causes. His neurosurgeon has ordered another thyroid test to be sure we have ruled out everything. We will schedule a date to "explore" the shunt soon. He said he will start by checking the current shunt function, then we may look at replacing his anti-siphon valve, and adding a programmable component to help find the right balance of pressure without future invasive procedures. The surgery itself will depend on what they find so it is a bit unknown, but without any complications we should expect to go home the day after surgery. He said we have done what we needed to do, and exhausted all of our other options. We have the choice to accept that this is the new "normal", or do the exploration surgery. The explorative surgery has minimal risks compared to his previous surgeries and may show us a problem that just cannot be found with MRIs and CTs. I cannot as his mom except that this decline is ok. Yes, he has CP and his brain has been through significant trauma over the years, but we will always push for his best chance at success. The dilation episodes are not seizures, and Dr. Lew does not think they are related to a hydro issue, unless they are caused by the fatigue. He said they may just be one of the neurological issues  that we cannot explain. Ayden is ok, he is unsteady and tired more, but this is nothing different from what he has been for months. If we would notice signs of a shunt failure, we would of course take action quickly. We will continue to pray that nothing gets worse, but this is just a problem that we would rather take care than accept as the new normal. We want him to be safe and continue to learn, not fall backwards. We feel confident in the plan and hope to have a date soon.

On a positive note, we made it back in time Thursday for his annual Christmas Program at school. It was great! It is a lot of work for all of the teachers, aides, and some of their family members too, but truly a blessing. This is the picture I chose to post because this is our focus right now. We will celebrate the holidays as a family and wait to hear what is next. 

Thank you to everyone that includes Bub in your prayers. He is amazing, and blesses us each day by the grace of God.

"Oh darn it!"

I started the blog the other night, but after driving home from Milwaukee and a night on the unit for a VEEG. Loading this picture is all I did.

Then I started to write this morning -
He is still sleeping, but starting to stir... Today we are headed to see Dr. Winsor in Hartford City. She is amazing, a wealth of knowledge, and one of the few specialist that is reasonably close. Maybe this afternoon we will have some answers, maybe not.

And now...
We have answers, but not solutions.

Why the title? Those that know Bubba know he has a mouth when he is angry. In an attempt to let him vent without the language, we have tried to teach some phrases. He still tried to push buttons, but I was really happy to hear "Oh darn it!" more often than other phrases. It gave a nice comical moment to a sometimes intense situation. It really just kind of sums up our week. 

Oh darn it!

Ayden has not been himself since this summer when he stopped swimming and diving down in the water. We went to Wisconsin Childrens in July, but there was nothing beyond clinical signs of an issue. So, we had some nice chats and said goodbye.
4 months later, Ayden is still tired, more than he should be. He lacks interest/energy to do some things he used to do. For two months the school has been charting what we nicknamed "crazy eyes". They are periods of intermittent dilation that do not respond to light. He falls more. He talks, but trails of or gets slurry more often. So we keep calling and talking to our neurologist, we tried adjusting his meds, but nothing changed.
We were advised to bring him to the ER on Tuesday. Bub and I headed there hoping for some answers. The answers we have are good and helpful, but not solutions to the problem. We had a fast MRI, and still no visible signs of hydro (not that we expect to see it on film). Then we were admitted to the Epilepsy Monitoring unit for a VEEG. We were able to record multiple events of the dilation and drooling episodes and get a full night of monitoring. We know there is no underlying seizure activity so it is not seizures. The neurosurgical team on our admit were not compelled to tap his shunt, so home we went. Fortunately, our neurologist consulted with Bub's neurosurgeon and he wants to see Ayden to address our concerns, but we do not have that appt. set yet.
All of the "loss" we see is unacceptable and cannot be ignored. Our neurologist understands and recommended we go to his ophthalmologist to check for pressure on his optic nerve. We did that today, we had to go to Hartford City to see her before December, but as always, it was worth every minute. She reassured me that all of my concerns were valid. At this time, there is no pressure on his optic nerve. His eyes were already dilated enough we didn't even have to give the drops for her to check. She told me to call Wisconsin today to follow up and keep the search for a neurological cause going. I did not call today, but I will not wait long.
Our neurologist also wants us to meet with Bub's PT (Our Parkview PT that has known Bub since he was 2). He needs documentation from her about the actual loss of gross motor, we have that appt. set for Wednesday.  Her report will be faxed to WI along with Dr. Winsor's report. As of Wednesday at noon our "homework" will be done.

So now what? We wait. 

 We enjoy the holidays as we can, after all Bub has his Christmas program in less than 2 weeks. I feel better knowing that the neurosurgeon we meet next will be OURS; The surgeon we went to Wisconsin for in the first place. Our hope is he will have some advice, ideas, or guidance. It is a challenge to convince others what your gut is telling you, so for now we establish our "case". Sometimes you really can feel like that is what has to be done. Could we have our pediatrician send us somewhere to get the shunt tapped for pressure, without any doubt. The problem with somewhere else, is it means starting over, and we really do like where we are. If we feel it is getting worse or progressing faster, we will do just that.

Does it mean when Ayden is sleeping well past his normal wake up time I don't worry about coming into the room and finding something I don't want to see? No. I will worry, its my job. We will keep a careful eye and look to the Lord to provide some solutions soon. He has come too far to lose anything for a long period of time. I am so thankful for all of the people who care for Ayden and will keep an eye on him when I cannot. I am thankful for the Hemi Mommas that have helped me feel sane and know what to ask over the past week as I have felt like I have to plead my case for Bub.

 Thank you to everyone who keeps Bub in your thoughts and prayers.