Josh's Big News

We have been busy. Really busy. So this might be a long post:)

This past week Josh had his every 3 month appointment with the Dysphasia Clinic (Feeding Clinic). I wasn't expecting any surprises there, and was really looking forward to having a last minute conversation with his GI doctor before our big appointment with the Colorectal Clinic (that we've been waiting for 2 months almost to get into) two days later. I knew her opinion carries alot of weight for us so I wanted to get her thoughts. But first things first. Stats. Josh is 36.7 pounds (13%) and 42 inches tall (26%). His head size is still 47 cm (-3 SD). They were pretty happy about that.. but said he is still a little on the low end of how many grams a day he is gaining. But I am happy with it, so it doesn't stress me when they say that. (mainly the dietician) While there, we went back over Josh's blood work that was done in April and May while he was in the ER and then his hospital stay. His BUN and Creatinine were off while he was in-patient. Those are liver functions. I remember them telling me that and he was supposed to have repeat labs done... and I forgot. What they didn't tell me was that FIVE other levels of his were off. Some of them are basically things that let you know how well nutritionally he was doing, such as his vitamin D is STILL low after a year and a half. So we are adding 1,000IU of that a day. His protein was off a bit so we are decided to repeat all his labs now and then again in 3 weeks. I hate that there are things to stress about. But what else is new with Josh? LOL.

So Dr. O'Gorman told me that after talking to the Colorectal Clinic and giving her opinion, she thought it would be perfectly reasonable to go to our appointment and walk out with surgery scheduled. The Clinic normally has a standard procedure they follow with all new patients and/or patients being referred for appendicostomy's. Dr. O'Gorman knew that Josh wouldn't tolerate large bolus rectal enema's for 2 months. He has had every test under the sun and then some more on top of that. So she told me to go in with a backbone and tell them the same thing she did... Josh cannot wait for 2 months. He needs this done asap for his health and well being.

So you can imagine how stressed I had become about this appointment. I was sooo worried that they were going to tell me they won't talk about surgery until we had done more things, or repeated tests, or something to that effect. I seriously didn't sleep all week. It was soooo stressful.

So appointment day arrives and we had to start with an x-ray. I didn't know about the x-ray, they forgot to tell me. Josh HATES x-rays. I think he associates them with his ER visits. So we had to do that before we even got started (and he had to have blood work done from the orders written on wednesday too) We checked in and got taken back to the exam room. Josh was being a little difficult this time around. He was really anxious and kept asking to go. Dr. Rollins came in pretty quickly and I remembered him from when Josh had his G-tube placed. He was the surgeon who did the colon biopsy's on Josh. I really liked him. So I calmed down and let him begin before I started in with my side of everything. I was shocked when he got right to the point, told me he had talked to Dr. O'Gorman and that Josh wasn't going to need to do anything additional. We were just going to schedule surgery. I was sooo surprised. I was ready to fight! Then he went a step further and let me make alot of the decisions.... such as exactly how they would do the procedure, where I wanted his tube to be placed in his stomach, ect. I had in mind exactly what I wanted, but didn't think in one appointment I could get surgery scheduled, pick the procedure I wanted (there are two ways to do it) and also decide where on his stomach I wanted the tube. Talk about an answer to my prayers! It couldn't have gone better if I had wanted it to! I really liked Dr. Rollins and was so impressed that he was so down to earth and wanted to make sure we got what was best for us. Not all surgeons will do that.

So surgery is scheduled for Augast 15th. He will be admitted on tuesday the 14th for prep. The surgery is about 3 hours long and will be considered laproscopic assisted appendicostomy. The way it is being done makes it so that he can't do the whole thing lapriscopically, but part of it. He will have an incision from his belly button down for a bit and then his tube will come out at belly button height to his right about 3 inches. So he will have two sites that will need to heal and will be sore. But it's all going to be worth it. Dr. Rollins basically told me that after reading his history, talking to his GI doc and all the tests and x-rays we have had done in the last 3 months lets him know that Josh's large intestine/colon is no longer working. We know it has never worked right since he was born, but for some reason when everything went down hill for him neurologically, the bowel issues were hit the hardest. They may bounce back a bit, but he is pretty sure the damage is permanent. So... now we will have a way to keep his system moving along. It will be nice to just hook him up to a bag of fluid that will run through him and clean him out. He can sit and watch TV or play his iPad while doing it. Much better than three people (Me, Scott and Trevor) holding him down to do rectal enema's every night.

So we are excited! Even knowing I have a 5-6 day hospital stay coming up 3 weeks from tomorrow, I am just happy to get the ball rolling and it will all be over with in a couple months.

Now onto some fun pictures!

First of all is Josh at the Feeding Clinic. This kid is obsessed with tongue depressors. While I was chatting with the dietitian and doctor, he kept sneaking another one. Yes... we took that many home with us:)

This is backwards but before we made it to our exam room, Josh wanted to ride in this car in the waiting room so he crawled in there with his feeding pump backpack shoving him forward, and yes... he already had his first tongue depressor from radiology:)

As I have been organizing and re-organizing Josh's Medical Supplies, I broke down and added the two white shelves on each side to make sure I can keep all his stuff together. But sadly enough... we will still have all the new  medical supplies that will come with his appendicostomy. I am not sure how I am going to fit it all there..... nice, huh?

Since April we have had to add doses of meds, change the way we dose his meds, and even add a new med. Before I was able to do all his meds 4 times a day. 8am, 12 noon, 4pm and 8ish pm. I had 4 bins labeled for each time and that is how we did it. Well now I am doing meds more often than that and so it wasn't working to do the 4 bins. So I got this idea from a special needs mom in one of my facebook groups. I give meds at 7:30am, 8:00 am, 12 noon, 2pm, 4pm, 7pm, 10pm and 2 am. So this works like a charm! Bet you never knew a muffin pan would be used for this purpose!

These are his meds that require refrigeration.

And finally some fun pictures! One of the other microcephaly mom's I have met through facebook runs a little foundation called Microcephaly Monkey House. She sends these cute Sock Monkeys' to other micro kids going through a hard time, or having surgery ect. She was so awesome and sent Josh one last week. I took a couple pictures of him. I wish I could get him doing his monkey noise on video. It's darn cute!

And last but not least. After finding out about Josh's seizures while sleeping, we decided to invest in this.... a video monitor. It sure relieves so much stress that anytime I wake up at night I can glance up and see how he is doing. Makes a stressful thing a tiny bit better:)

Thanks for reading all this (if you still are!) and we appreciate all the love and support!

Josh's Neurology Day

This is how I bribe him these days down at the hospital....he gets to throw in pennies on our way into the hospital and then again on the way out. Works good for now:)

So Josh had a big neurology appointment on monday. He had an EEG followed by an appointment with a PA since it was more of an emergency appointment and his neurologist is booked for months.

Josh's neurological function has had an obvious decline since April when everything went downhill for him. He had his balance issues back, his twitching and odd movements back, and was having all the GI issues, ect. Plus he began doing what I was pretty sure was absence seizures... where he would zone off and be out of it for a few seconds (they are ususally harmless so I wasn't panicking). His GI doc wanted me to call his neurologist after his hospital stay to see if he wanted to increase Josh's meds.

Now let me explain that it has never been definitive if Josh has seizures. His neurologist didn't know. Since his EEG came back normal 2 1/2 years ago, but he was having seizure-like symptoms that weren't happening during the test, he started him on Neurontin anyway, which is an anti-seizure med. Things got better. Rather than drag out more inpatient testing, we opted to just keep him on the meds. Everything has been stable since then.

So we went to the hospital to have his EEG done. I had to sleep deprive him since they wanted him to be asleep for some of the test. I honestly didn't think he would fall asleep since he was so upset about the 28 probes being pasted to his head. But he did fall asleep for 18 minutes of the 45 he was recorded. Since he didn't do any of the absence seizures, I figured we would once again have a normal EEG and not really get anywhere.

We had our appointment 2 hours after the EEG. I was surprised when she pulled up the results of his EEG and she read to me that he had 2 seizures while sleeping. I wasn't even worried about when he was asleep! I honestly felt a little blindsided by that. She also told me she is sure he has absence seizures as well.... it comes with the territory. The other thing the report said was the background waves.... like his brain electricity for lack of a better way to explain.... was abnormal. But she also said that with his microcephaly and now seizures.... it would be expected. So now we officially have the scientific proof that Josh's micro is more severe than we might have originally thought.

Now began the problem. How to treat him. We discussed a couple different meds to add for the seizures, but it didn't feel right either. Keppra is one of the ones we talked about, but the side effects are behavioral issues. With his ADHD and Autism Spectrum Disorder, she felt that would be a really big mistake. The other med we talked about was Topomax. But that med had bad constipation and appetite suppression as a side effect. That would really not be good for him with all his GI problems right now. So after she talked to another neurologist, we decided to max him out on Neurontin....which he is already on. So we added a 3rd dose to put him getting it every 8 hours now. We will increase each week for 3 weeks to get him up to his max amount. If this works.... it would be the best thing. If it doesn't work then we have to decided what to start and what side effects we can deal with. He will repeat the EEG in 3-4 months (when hopefully his GI issues are finally taken care of) and we'll see if what we are doing is working. She thinks if we notice a difference in the daytime seizures....the nighttime ones should be getting better as well.

We had to talk about what this means for Josh. We need to keep a closer eye on him, especially in situations when he could get hurt... such as climbing on things, around water, in the bath, ect. She told me that he could always have grand mal seizures now so keeping an eye on him at night would be good.

I don't think I have slept well since monday. I check on him several times a night. I just ordered one of those baby moniters with a video screen so I can see him all night long. I had to do something to ease my mind at night. Sleep is over rated right?

So that is our newest adventure. Other than that Josh is stable right now. We are doing enema's several nights a week and it's keeping him comfortable. July 20th can't come fast enough. (that is when we go to the Colorectal clinic). I am so done with this living in limbo:)

Emails for Josh

After Josh's last hospital stay I had several people tell me how surprised they were he ended up down at Primary Children's Medical Center. During the whole process leading up to his inpatient stay... I did do brief posts on Facebook about him. I didn't think about the fact that not everyone is on Facebook and therefore left out of the loop.

So I decided to do make a group email list and send out periodic updates that way. This way I can use my phone or the iPad as well.... depending on what I have at the moment.

If you would like to be added to my list and don't think I have or know I don't have your email addy... please leave me a comment with your email address or email me directly at christensenmelissa4@gmail.com and I will get you added.

Thanks! Josh can always use all the people praying for him that he can get!!

Breaks my heart... a Josh update

I have been struggling all week with this post. I have been trying to decide whether to do a brief post and pictures... or to be brutely honest about everything and say it all. After some thought, I have decided to go the brutely honest way... so this will be very detailed. Consider yourself warned:)


All of this nightmare began on April 18th. I assume anyway. I am pretty sure that was the last day that Josh was able to poop on his own without additional meds (besides the 4 he is on daily). On April 27th... after Josh was complaining (in his own way) and I had added all the additional meds and stuff I could do at home, I called his GI doctor. She was worried about an obstruction. She sent us down to Primary Children's Medical Center's ER to have some tests done. We got there, got in a room and the resident doctor decided to do an enema. She told me it would work in 20 min. It didn't. An hour later they did a second one. It didn't work either. An hour later they did a suppository. He pooped a little and it was not constipated poop like it has always been in the past. I started to worry. They got an x-ray and he did not have an obstruction or look like he was constipated. They sent us home with instructions to come back in 24 hours if he did not continue to poop. He had a LOT in there still. Of course Josh being Josh... didn't poop again and continued to complain of his tummy hurting. So I gave him extra time and waited until sunday morning (36 hours later) to return to the ER.

He was not a fan of this idea. He was signing candy... go.....outside... anything he could think of.

He just plain did not feel good.

He was falling asleep in my arms... which anyone that knows Josh... would know that it is so far from normal it's scary. He was shutting down on me.

After the ER took more x-rays to see if there was an obstruction, they clearly didn't know what to do. I told them I was really worried and 100% sure this was a motility problem and that no matter what I did... he would not go. At this time he was on double doses of two of his meds, I was giving him 3 adult doses of Miralax a day and had done something called Magnesium Citrate. That is our big guns. Doing that has never failed us before. But it did this time. I started to really worry that this problem was much bigger than I had ever imagined. When some trauma's came in through the ER we basically got ignored. I had several different resident's come in and suggest me using more Miralax. Really? Cuz I had NEVER thought of that. They would die when I told them how much we had already done and were doing. Nobody seemed to have a clue what to do. I told them several times that Josh is a mystery and has had every test and biopsy done that his GI doc could possibly think to do and we don't have any more answers other than this is caused by his Microcephaly. Finally after disagreeing with what the on-call GI doctor said to do... we left the ER. I knew we could talk to Dr. O'Gorman the next day.

So Monday rolls around and I finally get in touch with Molly (sorry... she likes to be called Molly...Josh knows her as Dr. Molly) and she vents a bit about how frustrated she was with the ER and that they let him go TWICE with his x-rays looking like they did. She decides to do something called 'Golytely' over night. It is the same stuff you use to clean out for a colonoscopy. Plus we added a few 'extras' for good measure. She lets me do it overnight at home and not back at the hospital like they usually do. We hook him up to the stuff and run him at 150cc an hour (keep in mind the most we ever run him an hour is 100cc) for 10 hours straight. We get up that tuesday morning (this is May 1st) and we wait for poop. And wait and wait. Finally about 2pm he goes a little. Then again a while later.... then again... and finally a 4th time around 6pm. Not what I was hoping for (amount wise) and it was NOT constipated poop. Molly agreed with me the day before that we are dealing with a really bad dysmotility problem.

So I thought we were in the clear. NOT!!!!

He never poops again. So the rest of the week goes by and everyday I keep waiting for his system to get going again. Nothing. By friday I was starting to worry, but it was the weekend and I knew I had to wait until monday to talk to Molly again.

Monday comes around. I call the medical assistant and wait by the phone. Nobody calls. I leave another message. No phone call. Tuesday morning I get up and start calling the medical assistant again. Still no return phone call. I was mad and frustrated. I call the scheduling line to ask about Molly's schedule. I find out she is doing procedures all day. So I realize the medical assistant might not even be there. But it's 4:30pm and I know it's too late. We go another night. Here we are on our 8th day again with no poop. I get up wednesday morning and call again. Kaitlyn had a field trip that day and so we still went although in hindsight I probably should have left him home. He was hurting and not himself. I FINALLY hear from Molly around 2pm. She had just gotten the messages I had been calling. She wanted me to bring Josh back to PCMC then to have a Saline Enema with Contrast to check for some things. I told her it was going to be hard to get there right then. (It totally sucks living an hour away from the hospital). So we agree to do it the next morning (May 10th). I get babysitting all arranged and off we go on thursday. In case you have no idea what a Enema with contrast is.... here is the grisly details. They insert a catheter in Josh's rectum, tape it in so nothing can leak out. They hang a bag of saline with a special dye in it that shows up on x-ray. They take a live x-ray,called Flourascopy, and it's done by the radiologist himself. While doing this, they insert about 2 liters of fluid. After they were done they told me they would lay the bag of saline under the table to let gravity work and get the fluid out and hopefully some poop too. They wanted another x-ray after all the fluid was out. Of course nothing came back out. So they took the tube out and put a diaper back on and wanted him to walk around the x-ray room. As soon as he got down... I knew this was not going to go well. His stomach was HUGE. He almost threw up immedietly. He was crying and not able to stand up straight. They waited and waited for 10 minutes for the fluid to come out. It didn't. They talked to the radiologist and said they had enough info... he could just go home because they needed the room for more procedures.

SO against my better judgment and mommy instincts I took Josh home. Getting him even belted in his carseat was a joke. I had to readjust the straps to fit around his huge tummy. He was clearly not doing well. I hurry and pick up the other kids from my mom and go home. As soon as we got home I took this pictures of his tummy.

Not good. I was actually scared to touch him. It was that bad. He laid down in the fetal position on our couch and cried. He wanted me to hold him.

About an hour after being home... he started to throw up violently. I started calling his GI doctor again... but it was her procedure day again (she does 2 a week every so often). I called radiology to tell them what happened. They tell me to head to the ER. I decided since I can't put anything in his tube or mouth to help.... can't do anything like an enema anymore... I had no choice. I won't lie... this was the first time I broke down and really cried. After dealing with all this for as long as I had... I was done. I got a call from Joe, who is the nurse with the Dysphasia (feeding) clinic and has helped me in the past. Somehow someone from Radiology had gotten the message to him and he told me to go to the ER and he would let Molly know. We love Joe. He was so great to help me during my little break down...to help me calm down and be rational about packing a bag and stuff.

I decide on my drive down to PCMC that I am going to be that mean, in your face mom. I was going to refuse to leave the ER until Josh was doing better. I was not going to leave until he was cleaned out and better. I was all prepared to fight. So I was pleasantly surprised that when we finally got checked in, had our exam room.... the doctor walked in and told me that he was being admitted. No why are you here... maybe you should give him some more meds... ect. Just a ticket to the 3rd floor. Our GI doc had came through and was VERY specific that Josh not be messed with down in the ER. No x-rays, no talk of more meds, no enema's. Just sent up to the Medical Floor. I have to tell you how relieved I was. Now someone else can be in charge of him medically and I can be the mommy.

Although I was thinking we would just be there overnight.. not 4 nights. I didn't expect to have the complications we had. But again... Josh never has followed the 'normal' path... so why would he now?

We arrived late thursday night in good old room 3027 and they got him hooked up with the Golytely again. I learned something though... when you do golytely... you keep running it through until it comes out clear again. Interesting. After getting him settled... some big bolus' of IV fluids in (because believe it or not... even with soooo much fluid in his gut.... he was dehydrated quite a bit) they started measuring his abdominal girth. He measured at 56cm. They started him on a slow rate and increased it slowly. About 8am the new nurse looked at his stomach and was worried it was getting bigger. We measured. It was now at 60cm. So they shut down the golytely and we got sent down for an x-ray. They were floored at how much stool and fluid from the day before was in there. All I know is the report said 'Significant amounts of stool' and 'impressive'.... awesome. So they decided to push through anyway and restarted the golytely, but at a slower rate and a slower increase. He did pretty good with it throughout the day on friday. Although he was not himself. And that is saying it mildly. He layed in his bed and didn't seem coherant or even responsive most of the time. He had shut down more than I had ever seen him. It was down right scary. He would look at me at times.. but it was like he was just seeing through me.

Even when I pulled out his iPad for him...he really didn't comprehend what was going on. It was soo heartbreaking.

His day nurse on Friday wanted to cheer him up and found him a package of cars. This was the most awake he was the entire day.

Friday night they did his measurements on his tummy at 8pm. It was down to 54 cm!! I was thinking we were kicking this problem in the butt. About an hour later I was checking him to see is he needed to be changed again and noticed his tummy looking really huge.... like really HUGE. I hit the call light and his nurse came in and was shocked. She did another measurment and it was 63cm. She paged the doctor who happened to be just one pod over and she came right away. She started talking about maybe we had a blockage or something and we rushed him down to x-ray. Thankfully it turned out to be air... but it was strange because it was not moving through his system either. The Dr on call was really perplexed. I was just glad it wasn't something worse. It about gave me a heart attack. We got him all settled back in and they turned off his golytely stuff and let him have a rest overnight.

One thing we did find out is how bad Josh really does not have the ability to regulate his temperature. We already knew he had this problem, but I have never actively taken his temp. like they do in the hospital. It would actually drop 2 degrees... and hang out around 96* at times... which is why I took this picture. It took us bundling him up with 3 warm blankets from the warmer and his comforter thing to get him back up to 98*. For the most part he was lower than higher.. but he did go up to 100* once too. It totally was an eye opener.

Finally on Sunday I got some smiles! What a great Mother's Day it was to see him even acknowledge me and want to have his cars in his lap. He still had not gotten out of bed at all since being admitted and was refusing to even stand up. It was so hard to see him struggle so bad.

About 11am on sunday morning we started him back on his feeds. They actually listened to me and did it a little slower than the orders were written for. He seemed to be tolerating the formula. We took a break from IV fluids and he went on his first walk about 4pm. I was excited hoping that this meant he was finally back. It was short lived. About 5pm he started vomiting and I was so sad to see that we had to shut off his feeds and start the IV fluids back up. I was really hoping to get home the next day. About 2am ( monday morning) we started the formula back up again, but this time they started him at 10cc an hour and went up 10cc every hour until we hit 100cc. He also had half formula, half pedialyte too. He did really well this time around. He even got out of bed and played!

We were discharged at 2:30pm on monday (may 14th). He was cleaned out and his tummy was less distended, but not back to normal. After 5 days I was sooo happy to get out of there.


But this is far from over. In fact as I am typing this post it is technically monday the 21st (don't judge me for being up at 2am... ) and Josh has not pooped since we left the hospital. We left the hospital with big increases to over -the -maximum doses of all his meds that help with motility and pooping. Yesterday Josh swallowed something called 'Sitz Markers'. We will go back to PCMC on thursday to see where they are in his GI system. The reason we are doing this is because we moving toward doing surgery for Josh. We are looking at doing something called an 'appendicostomy'. It is hard to explain so when I have more information I will let you know. But basically it is a tube that will be inserted through his belly  button and appendix for us to basically do internal enema's daily. We have exhausted all medicine options for Josh and are now looking at more invasive procedures to help his quality of life.

The GI doctor on call while we were in the hospital is Molly's partner. He gave us a second opinion and he also thinks that this is a really good option for Josh. He drew this drawing on our board to show us what the appendicostomy is. I thought it was funny so I took a picture.

So for now we wait. We wait for poop. How many people can say that? LOL!!

I am very curious to see what the x-rays will show on thursday. I really am done with this night mare. I want my Josh  back. I am tired of him hurting. I am tired of the daily stress this is causing me. I don't sleep well... I can't seem to get back into 'life'. I feel like I am stuck on a roller coaster that is out of control and at any minute things might just fall apart.

Sigh... but such is life with a special needs kid.... with a lot of medical needs.

Our Sweet Girl

Because of how the last few weeks have been going (that is for the next post) I haven't been able to get a post on here about Kaitlyn. So this may be picture overload... but I wanted to get everything on here.

These two kids make me laugh. They don't "play" together much, it's more like Josh tolerating Kaitlyn being around. She loves him and follows him around all day long.

One day while Josh was at school and I was cleaning, I realized that Kaitlyn had been really quiet. Too quiet. So I started looking for her and found her in the corner of our kitchen with the iPad. She LOVES the iPad but doesn't get to play on it much. She was in heaven.

Just another phone picture I took one day. Love her half smile:)

I can't get this picture to delete off... so enjoy it a second time..... LOL

Scott helped my grandpa out a few saturdays ago and got his lawn mower all ready for the summer. He took Kaitlyn on her first ride. She must have liked it since she didn't cry. I think she was in shock over the whole thing.

I took this picture to show the Orthopaedics how her feet and legs are all the time. She is still struggling with sitting flat on her bottom and some balance issues. She had xrays done and thankfully does not have anything wrong as far as bone structure. It's all tone issues. Her physical therapist is coming up with some great ways to help build strength in her hips to solve the problem. But thankfully we are officially done with braces for her feet!!

Doesn't that smile just melt your heart? We love her!!!

I was shopping one night and Scott sent me this picture. She had gotten a hold of a Code Red Mt. Dew can. She loved it. LOL!

This about summed up how she was feeling a few weeks ago before we got her ear tubes in place. She had 10 ear infections from christmas to april 16th. So far so good on the ears now. She had her post-op appt this past friday and things look fantastic. I am just so glad!

Recently I took all 3 boys to the dentist for their 6month checkups. She did so good... sat in the stroller through the whole appt and only got the iPad the last 5 min. What a sweetie!

With her ongoing tone issues... she is struggling outside more that a normal kid her age with balance. That has meant a steady stream of bloody knees. But she keeps right on going.

This about sums up what she did when I finally got home from the hospital with Josh. Being away from mom for 5 days was really hard on her. She didn't leave my side for a few days.

I love this picture of her. It's amazing to see how far she has come. She has made leaps and bounds with her development the last couple months. It's been so fun to see her personality take shape more and to have her hitting some big milestones. She still has some ongoing issues due to her prematurity, but I 'think' she has a good chance of being 'caught up' by the time she turns 2. Here's to hoping anyway~

LOVE THIS GIRL!!!!!:)

Our Miracle

*This will be a long post. But hang in there... you will become very educated as well*

The past 36 hours have been a huge whirlwind of emotions, stress, anxiety, you name it. Josh had two BIG appointments down at Primary Children's Medical Center. Not only is a Neurology and Dysphasia (Feeding) Clinic the two more stressful appts, but I knew this time would be different. I was going to need to ask the hard questions. I was going to ask about the things I have been afraid to ask. And I had a lot of Faith (along with a lot of prayers) that this would be a huge turning point for us with Josh.

And guess what?

Our Sweet Josh is a 'Pure Miracle'. The Neurologist said that word for word.

How could you not see that with this sweet face?

 So with that being said... here is the best news of all. WE HAVE AN OFFICIAL DIAGNOSIS!!!!!


We can now say with 100% accuracy that ALL of Josh's problems are caused by one thing. Microcephaly. Dr. Filloux has wanted to wait for Josh to get older and have had more MRI's and CT scans done, genetic testing done to rule out anything else before he gave me the official diagnosis. For those of you who don't know what Microcephaly is.... it means small head and brain. We have known Josh's head is small for years, but what we haven't been able to determine is how small his brain is inside. Basically he has some extra fluid space... meaning his brain isn't even as big inside his skull as it could be. It is still following some sort of a growth curve... so that is good. Dr. Filloux told me that he has treated children with bigger heads/brain size with more severe problems that Josh. He told me he thinks Josh is a miracle to be doing as well as he is considering how small his brain is. When he looked me in the eye and told me that.. I got all teary eyed and had goose bumps. I needed someone to tell me that.

So since this is so huge to have the official reason behind every.single.diagnosis/disorder that Josh has, I thought I would share with you word for word what Dr. Filloux said about Josh for me to take home and to the school district. (Bear with me.... )

Joshua has significant NEUROLOGICAL problems and conditions that is summarized below with the following recommendations:

1. Microcephaly: this means Joshua has a small brain size and this affects all neurological functions including behavioral regulation, social skills, language and communication, motor skills and coordination as well as appetite regulation, eating ect.. This is likely a genetic (Congenital Basis) and is NOT going to disappear. He will unfortunately require intervention throughout childhood into adulthood.

2. He has a congenital syndrome as yet unidentified. This congenital syndrome is associated with his microcephaly and other features most of which are neurological and derive from his smaller brain size and processing problems that result.

3. He has a language and communication disorder.

4. He has an autistic spectrum disorder.

5. He absolutely should receive intensive speech, language and communication therapy on a regular basis and should use assistive communication devices  and programs until native speech and language improve a great deal.

6. He needs ongoing Occupational Therapy for feeding and swallowing issues as well as coordination of both gross motor and fine motor skills, using pencil, drawing, and writing ect.

7. He needs intensive behavioral  therapy to help at school but also to guide parents with his behavioral interventions at home.

8. Physical Therapy for guidance on an occasional basis may be helpful as well.

9. These problems are not going to be resolved in a few years and he will require ongoing interventions in school, likely thoughout his entire childhood, but since he will be learning and developing he will require regular re-evaluation for educational and therapy needs. The above specifics however will be needed for at least the next three years.

So that is word for word what his Neurologist said. He also went on to explain to me this. Josh's brain is anatomically good. Meaning that he is not missing parts of his brain, or have any major malformations. He said that the 'electicity' in Josh's brain is messed up, and the connectors that make everything work in his brain and tell his body what to do... are missing. He said we know that they are missing because of his problems. Normal MRI's won't show that which is why he can't say for sure how bad it is. He said his opinion is that it's significant because all aspects of Josh's system are affected. We aren't going to pursue any further MRI testing at this time. We also are not going to pursue any genetic testing for a few years. His Microcephaly is Congenital... meaning he was born with it. We don't know why he has Micro... but we do know that is has caused every diagnosis he has.

We then had to talk about what I would have to say is the hardest thing to discuss. Prognosis for the future. This is what he had to say about that.

He foresees that by the time Josh is late teenager/early adult age, he will no longer have a feeding tube and will be able to maintain nutrition orally. He will be able to communicate (whether that be all verbal... or some communication device) completely independently. He said he is most concerned about Josh's ability to think, process and function independently. He thinks he will always need to live at home, or in some sort of a facility that will support him. He also thinks there is always a possibility that Josh will surpass everything we expect and do amazing. I vote for the latter:)

The only other thing we discussed about future was his opinion about potty training. He told me that he does not see Josh even remotely being ready to potty train for some time. He told me to talk to his GI doctor and Feeding clinic Team about their opinion.

So I did..........

This is the summary of that appointment....... Josh is stable now and they are happy with the progress he has made. His last appt 4 months ago Josh has lost two pounds and had not grown even a millimeter. They were very concerned. I had pretty much taken Josh off his formula and was letting him get all his calories orally. I wanted to challenge him and give him a good chance to do it on his own. We had given him 7 months. He dropped significantly on his growth curve and I was in hot water for it. So between that appt and 6 weeks ago... I still was trying to give him some time to do this on his own. But I realized after a ped. appt that he was sliding downhill and I had to step in and start the formula again. So we did. He seemed to start to maintain weight, but was having other issues. Josh has never done well with bolus feeds. (this means doing a large amount at one time). He has reflux issues and of course the severe constipation and NO motility through his system. So I made the hard decision a few weeks ago to put him back on 24/7 feeds. And I will be honest. It is not easy. But worth it. This time around though... I sent him with his feeding pump to school, something I had been able to avoid until now. In the last 3 weeks he has done so much better that I can't believe I have drug my feet for so long about this. Nothing is worth putting his health in jeopardy. I don't know why I did it. GI doesn't give me these options...they disagree. But with not knowing what was really wrong with Josh... I just would get in denial sometimes. So now that he has grown 1.4 cm and put 3 pounds on... he is stable. And they are happy. He is in the 18th% for weight ... and the 21st% for height.

And once again we had the future prognosis discussion. Dr. O'Gorman told me that I am NOT allowed to take Josh off his 24/7 feeding schedule until next summer. Not the summer of 2012.... the summer of 2013. And I do get it. Now that I know what is going on with Josh... and knowing it could take years for things to slowly improve... I do get it now. So I will follow her recommendations to a T from now on and not try to undermine what she tells me... just to 'see' what Josh would do. We also talked about her opinion of potty training.....or lack of. She told me that not only does Josh have significant neurological problems that are going to make it really hard for him to potty train, but he has significant GI problems as well. She said point blank, "he has a LOT stacked up against him in this area". Even if he had NO Neurological problems... the GI problems alone would make it really hard for him to potty train. She told me to not even entertain the idea for a year and maybe we can talk about it again next spring. But she admitted she thought that was being extremely optomistic. And honestly... it was like a load was taken off my shoulders. I have thought many times... what if I am just being lazy and if I put a whole lot of effort... maybe he could get it... maybe? Maybe? Although I have no idea how someone who doesn't really seem to know body sensations would 'get it'. But now I can just put it out of mind and keep chuggin along on what we can do for him. And I did get some good news as well. Seeing that Josh wears a size 6 diaper (he will be 5 in 3 months afterall) and most brands don't fit well... and those that do leak bad anyway (that is what happens when you have a total of 1530ml of fluid a day going through you) we are getting set up to have diapers from Home Health Care from now on. I am so relieved to get this going. I was wondering what the heck we were going to do as I was sitting there realizing that we could be using diapers for a long time still....and we are at the biggest size. Now I know:)

So as I have processed everything I learned yesterday, I have realized what I miracle boy we have. Already he has overcome huge milestones and I know he will continue to do so for the rest of his life. All the therapy appts, doctor visits, hospital stays, surgeries/procedures and dealing with this blasted feeding pump 24/7 again is worth it when I look at my sweet miracle boy. How could you not love this face?

And on a side note: I got some more good news today. I met with the school to do Josh's transition meeting. Meaning we decided where Josh was going to go to school next year. I was worried that I would have to fight the school since I have been doing that all year. But it was a great experience. I went in thinking I would have to fight for him to go to alternative Kindergarten.... where Trevor went. It's slower paced classroom with smaller class sizes. But Josh is actually going to a self-contained classroom instead. It means that he will have his own curriculum and not a set one. He will work at his own pace and on what he specifically needs. He will have a nurse around more to help with meds and feeding pump issues. A PT and OT will be in the classroom most days.. as well as speech. And the self contained class goes clear through high school. He will move around a bit classroom/school wise, but this option will get him through his entire school life. I had no idea that this was an option. The district liaison that I have known since Trevor was 3, is amazing. I am soooo happy to get to deal with her again. She does amazing things for these kiddos that need more help. She told me that Josh is quite a bit more severe is his disabilities which is why he needs this and since Trevor has done better with all his intervention... he didn't qualify for this option. So I feel 100% comfortable with the decision and that Josh will FINALLY get what he needs. FINALLY. He deserves it.

We sure love our miracle boy!!!!!

A Van, a birthday and a Ah-ha moment

I feel really MIA lately. Part of that is due to being sick for almost a month. I am doing fine now and am back in the game.... FINALLY!

We have had lot's going on in our house. I am really busy. Let me explain.

First of all... I had to reschedule a bunch of appts down at Primary Children's for both Josh and Kaitlyn due to the fact that our van was not doing so well and we didn't trust it to drive that far. So I took a forced hiatus on appts and pretty much stayed home. It was nice:)

But now that is all over. A week and a half ago... we dropped the kids off at Scott's parents, and went and bought this!

It's a Dodge Grand Caravan. And I am LOVE with it. 



Last week was Jordan's 8th Birthday. He has been waiting for months to turn 8... since he will be able to be baptised and start cub scouts. Yay for him! Since we are having a combo birthday for both him and Trevor this next weekend, we just did a little family pizza party on his birthday and he was able to get his gifts from us.

He was excited. He got Lego Ninjago stuff. His passion..lol.

Now... let me tell you how busy I am. I don't even want to think about it right now.

Between now and the 30th of March I will be: going to Primary Children's every week (the 13th, 21st and 30th) and the 21st is two appts in one day for Josh. I have six therapy appts, 3 group therapy sessions, one psychologist appt, 3 pediatrician appts and one school meeting. Plus a birthday party for Trevor and Jordan and scouts and pack meeting. It is one of those hold-on-for-dear-life months I guess. Thank goodness for my supportive family to help out with some babysitting:)


So anyway, a couple weeks ago Josh had his appt with Dr. Morales about his head/skull. We were able to get a CT scan done without sedation (prayers were answered) and got some good news. His skull in that particular spot is stable. There is still a chance for it to fuse too soon, but for now it is OK. We did find out that Josh's brain is smaller than we originally thought. The Doctor seemed concerned about that so we are heading back to neurology next week. With Josh.. .it's always a win some/lost some situation.

The only other thing that we have changed is putting Josh back on his feeding pump 24/7. He had lost another pound and wasn't eating anything. I gave it a good 3 months before making this hard decision. We had to order him the next size up backpack for his pump since he has grown since he was 2:) It has been doing wonders for him. He is sleeping better and his behavior is slightly better. It was a hard decision to make since it is such a pain to have him on that 24/7. We had to get creative in keeping him out of trouble with it. Since he can turn his pump off, unhook it from the IV pole, take his g-tube button out... and the list goes on. So now we have his pump in his backpack even at night. We just thread the power cord in his backpack. I bought carabeeners to go though the pulls of the zippers so he can't unzip anything. We pin his footy jammies with a safety pin so he can't undo his jammies. It is ridiculous what we had to do. But it's working and all is well. I am so glad to see a happier Josh than we have seen in awhile. It makes me sad that we have to go back to the feeding pump 24/7, but we do what we need to do.


So now for my Ah-ha moment. As Kaitlyn is getting bigger she is getting into EVERYTHING. We are constantly trying to keep her out of Josh's medical supplies. I also have stuff in like 4 different places in our house. So I decided to bite the bullet and put some money into organization. I am quite happy with what I came up with. Kaitlyn can't get into anything and it's all in once place. WaHoo!!!!!