Overnight feeding update.

The last couple weeks have entailed trying to set up some new routines around Gabriel’s G-tube and feeding. We have a whole new set of medical equipment-bags, syringes, pump, hangar, etc, etc.

We got the pump for over night feedings for G a couple weeks ago. We jumped all of the insurance hoops and supposedly had “approval” for it to be covered.

Then the day it got delivered the rep explained that insurance may or may not be covering it. Super GRRRRRR! So for now we have it! If insurance doesn’t cover it we will have to decide if we want to pay out of pocket for the machine rental and bags or quit the treatment (which would be several hundred $ a month). We are documenting everything and plan to FIGHT to keep it! The whole diagnosis and point of the G-tube was for him to have overnight feeding.

Now the good news. Gabriel’s energy levels, attention, and ability to communicate improved immediately when we started doing the overnight feeds. We are still learning how to use the pump correctly. One night it just didn’t work correctly. G was noticeably more irritable and less communicative the next day.

When I say communicative I am referring to his ability to articulate what he wants, what he is feeling, and participate in conversation. These last couple weeks have been so enjoyable as his parent. He is able to follow directions. He is loving to play and giggle. He loves to do things that get Chuck or I playing or laughing with him.

I don’t dread taking him the grocery store with me! He can actually help a little bit and we talk about the foods he wants to get, etc. In the past grocery shopping was sooo hard. He would melt down multiple times every trip. Run spontaneously through the store ripping things off the shelves.  In contrast, now that he is able to communicate he can tell me what he wants and we can go get it!

We went to  local amusement park last weekend and we all had so much fun! He was able to stand in line and wait his turn! (well like a normal preschooler) He and his cousin made up silly inside jokes about their favorite rides.

He seems happier too. He is humming and singing to himself almost all the time.

It feels like several of the recent steps have been significant in unlocking his ability to participate in the world. As I am watching him come more and more into himself I understand why he spent so much time emotional and frustrated. I feel like the ADD meds got his brain to slow down enough to process (receptive communication) and now the nutrition is giving his body and brain the ability to participate in the world.

Exciting and heartbreaking all at once! I am so proud of how well this kid handles all the insane things he has had to endure. For now we are celebrating that things are going well!

 

Best Day EVER!

After several weeks of slowly adjusting Gabriel’s Valpo and ADD medicine, we had a great day yesterday!

Gabriel was alert, attentive, and articulate! He was able to answer questions quickly and in context. He engaged in play both with me and by himself! He put his own shoes on (before I asked!) and even used the potty! He only had 1 breakdown, it lasted 5 minutes then he moved on!

Today started out wonderfully as well. He helped me cooked scrambled eggs for breakfast. He willingly got in the car to head to his day camp at church. He put his backpack on to walk down the hallway, and even greeted his teacher!

Everyday is new and different. I am keenly aware that tomorrow could be crazy full of emotional breakdowns and impulsiveness and silence but yesterday…was AWESOME and I hope for many more days just like it!

A facebook friend recently posted something about those moments when you see your child shining through neurological challenges. Those moments are beautiful and precious! My hope and prayer is to see more and more of G shining through Doose. I also hope and pray for other parents to see more of their own children shining through whatever neurological, physical or emotional challenges their families are facing.

50% reduction-New Blog Series

HI Readers,

I am starting a new series on our family’s journey with cleaning, purging and organizing our lives.

I set goal of reducing the number of objects in our house by 50% in 2014.

Yep 50%.

Last year (2013) my goal was to give away at least one minivan load of stuff each month. I had successfully completed this goal plus some. Still, our house was overflowing with things we didn’t need and/or use at all.

So, I set the goal for this year and started posting my adventures on facebook.It is awesome getting feedback from others who have been inspired by my crazy journey. I have loved that people are sharing their own stories. I get pictures of things heading to donation centers, articles of inspiration, and notes of thanks and encouragement.

After months of saying things like “We don’t need 1/2 of this stuff”, or “we could get rid of 50% of the stuff around here and never notice”, I had stumbled upon a goal. I haven’t been legalistic about it. I’m not counting the number of spoons I have and getting rid of 1/2 of them. I am picking different areas and ruthlessly purging. Sometimes I work for hours and do a whole room, sometimes a few minutes and attack one drawer. I get easily overwhelmed so I give myself a lot of grace.

We’ve been at it a full 6 months and I am seeing a difference. It is much easier to find things now. Cleaning up at the end of the day is easier because more things have a home. We have been able to bless others with things we didn’t need.

Here are a few of my favorite tips I have employed in the last 6 months:

1. Trash Only –I have 2 different methods. Sometimes I will set a timer and see how much trash I can find around the house in 15 minutes. Sometimes I will choose one area or room and look for all the trash in that space.

2. One small space at a time. (i.e. one set of bathroom drawers, top of desk, laundry room shelf). I empty everything out of that area. Then sort into 3 piles: Keep, Give Away, Throw Away. I put the keep back. It is always great to see how much better stuff fits. Most times I try to organize it well as I go. True confession time: It doesn’t always happen, however at least everything in there belongs 🙂

3. Always have Give Away Boxes/Bags. On each level I have either a bag or box of things that will be given away. It makes it easy when I run across something we no longer use. Just toss it in the container. (I have separate bags from separate charities at this point, because I’ve been at this long enough that I know which organizations need/accept what items).

Here are a couple resources that I have used to inspire my ideas:

1. Fly Lady- She has TONS of great tips, ideas, routines. She starts simple and adds from there. Her website has TONS of great ideas, and tips.

My favorite tip from the Fly Day is to your clean your kitchen sink everynight before you go to bed. This was a HUGE help while we were doing the Keto diet.

www.flylady.net

2. Peter Walsh
Walsh is a professional organizer who does a lot of daytime tv segments (Rachael Ray, Oprah). I first saw him on a TV show called Clean Sweep, where he and a team would go in and rescue a families who had been buried in their own stuff. He has several books with great tips and tricks.

My dream would be the have Peter Walsh come organize our home. Thankfully, we are not to the level of the TV shows rescues he does.

My favorite tip from Peter is what he calls the “trash can tango”. Each family member grabs a trash bag and has 5 minutes to fill it.

http://www.peterwalshdesign.com/#&panel1-3

Back on Valpo?

“Never say Never”

I can’t count # of times this saying has gone through my head in the last 2 years.

Last week we put Gabriel back on a medicine we had just weaned. WHAT?!?

Isn’t the goal to get him off all of these meds as long as we can remain seizure free?

Yep! That’s the goal and we are still seizure free-PRAISE GOD!

However, our sweet boy was a complete and total emotional wreck. He was spending literally hours a day in hysterical tears  unable to calm himself.

We are few days away from it so I can laugh about it now, but he literally cried and cried for over an hour because he did not like the screws that were holding the door latch in place. 🙂  Oy VAY! 🙂

After TONS of research and conversations with his various teams we decided to put him back on Valpo (no longer for seizure control but temporarily for mood stabilization). Instant change for the better. 🙂  Never say Never.

We are still adjusting things and I I imagine will be for quite a while.  He is still very emotionally fragile but at least now things that upset him make sense.  We are in the process of adding a child psychiatrist to his ever expanding group of specialists working for his good.

This has been one of the hardest periods we have been through on our journey. I really struggle anytime I feel like we are loosing his personality and ability to function in the world.  There are 3 distinct times this has happened. 1. When the seizures first started. 2. The first few weeks of the Keto diet. 3. The last few weeks. I am so thankful that things are seem to be moving in the right direction for now. Even if it means doing something I would have said we would “NEVER” do.

We have our follow up with the G-tube surgeon tomorrow, so I will post about that after our visit. The best news on that front is that Gabriel does not seem to have any pain associated from it anymore. 🙂 So far he is not at all self conscious about it either!

He is making great strides in both Occupational and Physical Therapy. He willingly practiced chewing, swallowing, and putting on shoes at his last OT appointment. Physical Therapist literally squealed with joy when he land an impromptu jump from one balancing contraption to another. It is something we wouldn’t  have ever asked him to do. He totally surprised us by the jump but  he STUCK the landing! GO G!. Never say Never 🙂

 

 

 

 

 

 

Post G-Tube Surgery Update

Gabriel’s surgery went very well on Monday. The hospital did a great job of preparing us for exactly what would happen and why.

Before surgery one of the workers from Child Life came by and showed Gabriel pictures of the surgery room on the Ipad. She did a great job explaining the things he would see and hear in terms he could understand. She let him practice using the breathing mask. She had a little kit with the different air fragrances and he got to smell the orange air beforehand (the scent he had chosen). It was great that he could have some of the sensory experiences beforehand in a safe calm environment.

We actually had nice family time while we were waiting. We used the iphone and listened to and sang his favorite songs….you know Jesus loves Me, You’ve Got a friend in me(toy story), let’s go fly a kite, and away in a manager (never enough Christmas music for us Russell’s!)

We said good bye and they wheeled him back. The surgery only took about an hour. They go in laproscopically through the belly button to place the device. His Mic-Key is about 3 inches to the left and 3 inches about his belly button.

After surgery he was fairly out of it and in a lot of pain. Neither Chuck nor I had thought about the amount of pain he would be in ;(. He is normally an uncharacteristically tough kid. He cried quiet a bit and reported he was sad and that the owie in his tummy hurt. While, these were difficult to hear, we were very thankful that he was able to communicate his needs and feelings! In our past hospital stays he has not been able to verbalize his experiences.

We were checked in a room and prepared to spend the night as planned. Shortly after getting checked in the room, his nurse informed us there was a possibility of us going home that day (if we wanted to). She was great and kept checking with us to make sure we were ok to go. It was pretty clear to us that going home the day of surgery is uncommon. Several hours later we felt confidant we could manage things at home. We got a very quick lessen on how to use the Mic-Key (G-tube), filled the pain medication prescription and were on our way! I don’t know if they needed the bed or what, but we were fine to go!

Gabriel has been a total trooper since we got home. He is VERY nervous about us touching his “Button” but after 3 full days at home he let us give him medicine through the G-tube without a fight. The first 2 days he rested or slept most of the time. He would occasionally get up and take a few steps, taking tiny steps and hunched over a bit. By the 3rd day he was up and moving around like normal 90% of the time.

The next step is for us to start supplemental feedings. We will start with basic pediasure and go from there to make sure his nutritional needs are being met. This is going to be much more complicated that we originally thought. We found out in the hospital, that he does not qualify for a pump to deliver his nutrition overnight. To qualify for a pump you have to be 100% tube fed OR prove that gravity feeding doesn’t work.

One of the main reasons we did the G-tube was to get the supplemental nutrition he needs. The plan was to do this with the aid of a pump overnight while he slept. So now we have to try and prove that gravity feeding does not work. We are going to try it but are not optimistic that it will go well because it entails him willingly sitting still for around 20 minutes a day, 3 times a day every day (with one of us there with him administering the pediasure).

If he did not have impulse and behavior issues that are currently not under control that would be fine, but that is NOT the case right now (that will be a whole different blog in itself…our last medicine wean has been TOUGH!). So we will spend the next 2 weeks trying and documenting, then send in a plea to the insurance company for the necessity of the pump.

Thank you for keeping up with us and praying for us! I know there a lot of details here. Sorry if they are boring 😉 I try to include things in our blogs that might help other families on the same path. I can’t count the # of times I have relied on the experiences of others further down the road then we are. I have found blogs to very helpful resources in our journey and pray that our blog is not only a record of us and a way to keep friends and family inform, but a light for those behind us on the road.

Surgery on Monday/Down to 1 Epilepsy Drug

Gabriel Learning About G-Tube

Gabriel Learning About G-Tube

First-the BEST news…Gabriel is officially down to 1-YES 1. Medication to control his seizures! In the last 2 years he has been on as many as 4 at a time (not including the diet!). So as of October we have weaned off the diet and 3 medications! AND NO Seizures! YIPPEE!

This last wean has been tough. G’s emotions are all over the place (especially inconsolably sad) and we are having to be careful to keep him safe. At the same time he has been better at communicating. He is singing FULL songs again (instead of only one line) and tons of other good stuff.

This Doose stuff is not for wimps! I remember when all we were focused on was STOPPING the seizures. I naively thought that if we stopped the seizures everything would be back to normal. Not quite 🙂

I am so glad the seizures have stayed away for so long but the reality is there are many health concerns that have come as result of this syndrome and the seizures could come back at any time. Right now we are focusing on muscle tone and coordination issues. We are focusing on his chewing and swallowing muscles a lot in Occupational Therapy. It was surprising to me that epilepsy could cause eating issues, that lead to aspiration, chronic congestion and pneumonia! We are blessed to have great medical professional working with us to help find solutions!

Gabriel is scheduled to have a G-tube inserted on Monday. We are excited and nervous about the procedure. We are excited because it will give us good options for making sure he gets both nutrition and medication that do not rely on weak muscles to do all the work.

We are nervous because it is surgery, under general anathesia. Along with the normal concerns anathesia can cause seizures–either right away or as an after effect.

All of the pre-op appointments have been wonderful. We met with the surgeon, he was very nice! Kind, compassionate and patient. They used us the device Gabriel will have. It is called a Mic-Key. They had a special dolly that we got to practice using the MIc-Key with. Gabriel especially like this.

Please pray for a smooth surgery with no complications and no seizures. Pray that Gabriel does not fixate on the Mic-Key and try to pull on it. Pray for us to peace while Gabriel is in surgery and away from us.

Thanks 🙂

I

Weaning Another Med! Good News/Annoying Side Effects

The adventure continues 🙂

Gman has been doing so well! We got to go to a family wedding in St. Louis a couple weekends ago. It was awesome to have family see him acting like a real kid! We only get to extended family a few times a year. They have seen the worst, the constantly seizing kids, the laying on the ground exhausted and loaded on medication kid, the all over the place ADHD kid. We tried to live life as normal as possible during the worst times, but what a delightful difference to be able to participate in the celebration like “normal”. His eyes are bright again! He smiles his HUGE smile often and loves to run and play. His physical strength continues to grow.

We had a very successful an easy wean off of Onfi. So Gabriel’s doctor gave us the green light to wean Valpo! Yippee! After this wean Gabriel will be down to 1 medication to control is his seizures! We view this as very good. The less medication the better!

We will be weaning for 4 weeks. We are two weeks in. Ironically this wean has not been smooth sailing. We were prepared for the Onfi wean to be rough, which it wasn’t. However, we were not prepared for Valpo to be tough.

It feels like we are once again back to that 2 year old super impulsive and hair trigger emotion stage and crazy sleep patterns. He is forgetting basic safety tips like not leaving the house without and adult or staying away from the hot stove. So we are back to lots of locked doors and no cooking on the stovetop unless 2 adults are home. He is awaking up and staying wide awake in the middle of the night again 🙁 Waaaaa! 🙂

At least the impulsiveness comes and goes. The ADHD medicine is not able to control everything but it still helping. I am higher alert than I have had to be for quite a while but I do feel like I can at least the leave the room for 30 seconds to go get something. Thankfully we have LOTS of great times. I would say on average his days are 50/50…balanced and normal kids verses my neurons are not firing correctly (emotional/impulsive)

He gets incredibly sad over small things. He will cry and scream not able to communicate what he needs. When he does finally get it out, it something like I put the Orange Juice on the wrong shelf. His frustration on these things doesn’t seem to be out of stubbornness but a sense that something is really wrong.

The sleep is the hardest for me. I think I have been able to sleep all the way through the night maybe 10 times in the last 2 years. Since we started ADHD medicine he usually wakes up 2 or 3 times a night but goes right back to sleep, not ideal but workable. The last week or so he is getting back to waking up and staying awake for a bit. Last night he was awake from midnight to 4 a.m. The lack of sleep is toughest because he is full steam ahead all day and I am exhausted. Then the impulsive things happen and I have no reserves to handle situations well.

HA! I just realized reading over this blog that the lack of sleep has Gabriel and I functioning about the same…50% of the time everything is good; 50% of the time I may or may not be able to think straight. I know this wean is the right thing and we will stay the course! After it is done we can reaccess his ADHD needs.

Gabriel’s Next Medical Adventure: The Power Of Collaborative Listening

As most of you know Gabriel recently spent a week in the hospital with both a viral and bacterial pneumonia along with RSV and a Corona Virus.  Since the pneumonia were in both lungs, I guess you could say it was quadruple pneumonia with a triple viral infection.  The kid continues to defy the odds.  Amy and I are going to have him start picking lottery numbers soon.

Even previous to this, our next adventure was to try and figure out why he seems to be chronically congested and sick.   Last year we did a sleep study which identified low oxygen levels in his sleep as well.  All of this is related to the epilepsy – both the damage that it can do to normal developmental processes, and the effect of the multiple drugs he is on on the development of muscle tone.  All of this effects sleep, eating, etc.  One of the issues G has is a tendency to aspirate liquids and food – meaning some of it gets into his lungs.  He may also be having night reflux which aspirates.  All of this because the muscles in his mouth and throat, and his swallow reflexes have been reduced by either the epilepsy, the drugs, or both.   This is, they are pretty sure, the cause of his overnight fever spikes (104 or so) from time to time,  his lower than normal Oxygen levels, and his vulnerability to more serious long term infections.

So with all of that, we first visited a Pulmonologist – Dr. Taylor who was one of the most informative and helpful practitioners we have come across.  Without being to snide – its amazing how much of a quality difference you can see between sub specialties at a given hospital.  I could go on and on about the Pulmonology department, but I’ll just say this – if your child has issues that these docs address, you are in wonderful hands.

Dr. Taylor examined G and suggested that we be seen by the Aereodigestive Group.  A newly forming unit at Children’s Mercy.  The group is made up of doctors and other specialists from a variety of disciplines.  It is a collaborative effort at diagnosing and charting a path for complex patient cases.  Here is what happened when we met with them.

After talking with an intake nurse and giving a complete history a few weeks ahead of time,  we arrived and, as usual, were weighed in and got normal vitals etc.  Gabriel was given a hearing test (not sure how that played in but it was in a cool spaceship like thing), and then we all went together to meet with the team.  There were 4 or 5 doctors including representatives from Ear Nose and Throat, Gastroenterology, and Pulmanology.  In addition to the docs, there was an occupational therapist, a social worker, and one other person I cant recall what they did.

The intake nurse went over our case with the doctors describing the referral from Dr. Taylor, along with the intake information we had provided.  She reviewed all of his medical history with them but it was clear they had all read up on Gabriel’s case ahead of time.  They then began asking us questions, exploring in more detail the information we had provided.  At the same time, the OT was working with Gabriel to asses his swallowing and other reflexes etc.

I felt like we were on an episode of House, except we were participating as a part of the diagnostic team.  Most importantly they were practicing careful, active, and attentive listening.  Our whole experience with this team and Pulmanology reminded me of our experience at Johns Hopkins, where the Doctor met us in the lobby, and then orchestrated the team listening to us and giving us feedback one by one.  It is amazing what a little active listening and collaboration can do to instill respect and confidence in parents of sick kids.  Some day I will write an autobiographical paper on the varieties of experiences we have had through this journey.

After the pow-wow we were dismissed back to our room.  The team met together for 15 minutes or so discussing our case and preparing recommendations.  Then one by one they came in and examined Gabriel individually and shared with us their recommendations.  The best thing about the approach is that it utilized a diversity of specialties to propose one unified game plan for helping deal with G’s issues.  So, this is what they recommended.

He has significant issues with oral skills and oral reflexes.  This is related to the kinds of drugs he is on (mostly neurological depressants) and the impact of the epilepsy itself.  He needs significant continued attention to the fine and gross motor skills necessary to rebuild these skills and resources.  (In other words targeted Occupational and Physical Therapy).

However – given the behavior issues and the way those have been address positively by the ADD medicines they want to continue those (thank goodness) but the addition of those meds have lead to weight loss (Fairly significant).  He also is not getting enough hydration which affects his ability to have productive coughs.  Everything is so interconnected.    So in order to better hydrate him,  give him the time to practice eating instead of trying to get lots of calories in him, to avoid the battles over liquid medicine that sometimes may be aspirated as well, and in order to get the proper amount of calories while also keeping his behavior regulated with the ADD medications. They are recommending supplemental overnight feeding with a G-Tube.

After getting over the frustration of not being offered this option during the Keto Diet nightmare – (The doctor told us how much easier it would have been with it – almost wish we had not heard this),  We were both nervous and excited about the possibilities that the G-Tube could afford.  Namely,  we can work patiently with Gabriel to eat at a slow pace without worrying he isn’t getting enough nutrition.  We can work on his fine and gross motor skills necessary for good feeding.  We can use thickened liquid so he doesn’t aspirate without worrying that he wont get enough hydration, and we will be able to give him medicine without anything having to go in his mouth.(Amy was especially relieved about this as she dreads the drama of giving him medicine).  All of this will be awesome and will make life much more pleasant.  He will also be able to continue to eat and drink normally as he chooses – we will just make up for what he didn’t eat and drink overnight.  And he will be able to do pretty much everything any other kid can do including swimming, bathing, etc.

Obviously this is a surgery so it has risks, but it is a very common surgery done on very vulnerable people all the time.  Gabriel has been under General Anesthesia before so that lessens our nerves somewhat.  But your always nervous when anesthesia and surgery are involved.  We meet with the surgical team soon to get details and schedule surgery.

Our plan is wait until school is out before having the surgery.  This will allow us the flexibility to focus on Gabriel’s care and  tweak new routine’s without outside scheduling conflicts.  Our summer will be filled with doctors and therapy appointments. Thankfully Gabriel is a total trooper and even enjoys going to see doctor or “play” with Ms. Amy (PT), Ms. Shelly (OT) and Dr. Hilary (Behavioral Specialist)

The overall lesson here is,  its good when a team of doctors listen and collaborate and plan together. We are continually thankful that we asked for the sleep study, all those months ago. This significant issues would not have come to light without that study.  We hope this will be another milestone on Gabriel’s continued recovery from the Doose monster.

Officially a full year seizure free! but we are still battling epilepsy

Gabriel has officially past the year mark without a seizure! YIPPEE! What a year it is has been! We have learned that stopping the seizures has not stopped the side effects and other issues that Doose causes. However it is a HUGE milestone to be celebrated!

The year date came and went without much fanfare because he was so sick with RSV and then pneumonia. We spent a full week in the hospital. There were some stressful and scary moments, like a sudden 105 fever spike that seemed to come out of nowhere or oxygen levels plumanating when the oxygen mask was removed for an x-ray. However, in general this hospital stay was not bad. Unlike our other visits, the medical teams deal with RSV/pneumonia type things all the time. We knew what was wrong and how it should progress. We weren’t having the follow the ketogenic diet. AND we had TONS of help! Thank you everyone who brought us meals, did our laundry, visited us, sent balloons, etc. etc.  I am not exaggerating when I say we would be lost without you!

We have been home from the hospital for almost 2 weeks. The first week Gabriel did great! He played and played and played some more! He talked non stop and soaked up all the attention. We had  good follow up visits with Occupational Therapists to check on his swallowing and with our family doctor.

The next steps are going to include working with something called an Aerio Digestive Team (I am sure that is spelled wrong) , and a Pulmonlogist to resolve his oxygen levels. The ideal number is 100 and he walks around in the low 90’s and dips into the mid 80’s during sleep (translation-not enough air-not good). At least that is where he was when he was healthy before this last bout of pneumonia and the hospital stay.

After the great EEG results we are getting to wean another one of his medications (Onfi- for the epilepsy families following this)! YIPPEE! The goal is to only have him on the medications that he needs. The less medications, the less side effects, the easier on the brain.

The weans themselves can be tough. We have been very lucky that so far, that we have not seen side effects when weaning medication. This last week was tough though. We don’t know if it was medication wean, or the wean in combination with heading back into the school schedule (after 3 weeks off due to illness and spring break). But he has been needing naps again, he has been very emotional (out of character) and has had dry heaves in the middle of the night. All are possible side effects of weaning but also all things that can be attributed to a full week back at school.

We are hoping our happy playing, chatty boy comes back soon. So many ups and downs. One good thing about our ups and downs is that we have learned to really appreciate the ups! 😉

Thanks for your prayers and support as we continue to fight for our boy 🙂

Hospital Stay Update

Gabriel is continuing to improve at the hospital. He is able to be on “room air” as much as possible. He spent most of the day without oxygen yesterday. Today seemed like a small step back as he needed the oxygen most of the afternoon, because his baseline number was lower than it should be. For the most part he is in good spirits.

We had a plan to start adding thickener to all of his drinks because he is getting fluids in his lungs. There are a variety of issues with his chewing and swallowing. Thickening his drinks will help strengthen those muscles and ultimately make him healthier. I am usually willing to try just about anything, but really raised my concerns about this because I know how stubborn he is and he is has several eating quirks right now, one is he wants food that is the same as other people have. He is very aware and suspcious if you try to give him something different or tweek his food. The OT (occupational therapist) who first suggested and introduced this got to see first hand Gabriel’s unwillingness to cooperate today. He has basically taken 2(yes literally 2)sips out of straws since we introduced the thickened drinks yesterday. Right now he is on an IV with fluids, so he is getting hydrated but clearly that will not be the case when we come home. The last word was the OT was going to talk to the doctor and see what other ideas we could come up with. Oy VAY little man 🙂

We are in the hospital until he is able to be on room air, or off oxygen, for 24 hours. We are hoping (and planning on double checking) that they are taking into account that his “normal” oxygen levels are low.

Thank you SO Much to everyone for the support! We know our prayers are being answers! Keep praying! The meals, delivered groceries, care package ,etc have been IMMENSELY helpful! The most helpful things right now are prayer and meals brought to the hospital. EEEEKKK…

LATE BREAKING NEWS: as I was typing this I got a call that Gabriel is now vomiting ;( Poor kid. So obvious step backward. Keep the prayers coming!