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!!!!!

The many faces of the kids

I decided to take some pictures of Kaitlyn the other night to show how weird her hair is growing in... and the lack of hair as well. lol.

But first.... the boys take my camera on a regular basis when I don't know it. I never know when I download pictures what I am going to find. This picture of Jordan was on there. I couldn't resist. It captures his personality perfectly.

With Josh's developmental delays and as Kaitlyn is getting older, we have noticed the developmental gap between them getting smaller. It has become almost like twins in some ways. Kaitlyn is learning to sign already and knows about 6 signs now. Josh signs. I am changing diapers for both. So it has just become the natural order of things to get them into the same bedtime routine now as well. So we started bathing them together at night and then we tag-team getting them ready for bed.


I took these pictures because I couldn't resist showing how much fun they 'can' be.

These pictures were to show how long Kaitlyn's hair is getting on the top back of her head and the bottem back of her head. No idea why those two places have long hair... and why it is just  thin little strand. But I had to take pictures to show you. And yes... you gotta look real close... maybe enlarge the picture... it is hard to see.:)

I guess if all else fails... we could always mohawk her hair;)

Once it dries.... it goes back to hardly able to tell she has any. I have high hopes that one day I will get to do fun things with her hair. I just hope it's before she is 5.

She really is so much fun and a joy. She is the center of attention here...even with 3 brothers. We all love her!

I guess I can't wait........

I have been telling myself as soon as I get some pictures, I will update the blog. Guess what? I haven't been taking many pictures. If I do... then they are always on my phone. So as I am sitting here tonight, I figured... it really can't wait. So here is an update in the fastest way possible.

Trevor - has been struggling in school more, but has had some really good days too. It is so hard to gauge with him when a bad day is going to come. All in all though, he hasn't missed any school due to meltdowns or non-illness related issues since before Christmas. I am really proud of him. So what if he won't do his full 20 minutes of reading every night.. or finish his spelling..... or always do his speech exercises? He is going to school without crying. Baby steps I tell ya... baby steps.

Jordan- is his usual crazy and wild boy. He is very social as always and can tell you so much about every kid at school.. no lie. He has his swarm of girls who seem to all love him and thank goodness he doesn't seem to care much (yet anyway). He is doing well in school and is learning all kinds of things. It seems like every day he has some tidbit of information that astounds me he knows. What a smarty pants he is!

Josh- well......where do I begin? In case you haven't already heard, he was officially diagnosed with autism in December. Life is a struggle most days with him. Thank goodness for the iPad, because it sure saves me some days. I am still working on getting a communication program set up on it for him, but he works on letters, colors ect. daily on it. He hasn't been eating as well and so has been back to 2-3 cans of formula through his G-tube again. His tummy issues are still come and go. The most concerning thing right now is a spot on his head. He started forming a ridge along one of the suture lines about 3 months ago. His skull most likely fused too early, causing alot of his problems. So for a ridge to randomly start forming at 4 and a half is really disturbing. We have an appt on the 29th of February to see a Cranio Surgeon. We hope to find out what is going on.

Kaitlyn- wow... this girl is on the move! She began walking 3 weeks ago and hasn't looked back since! She wears her braces to keep her feet better positioned and her balance and walking is so much better with them on. She is quite bowlegged... so we have an appt next week with an Orthopedics doctor to see if we can get a handle on it now. It's still questionable if it is because of sensory issues, or something neurological. Her Physical Therapist pushed for us to get this done as soon as possible. But the greatest news?? She is off oxygen... and maybe just maybe it is for good!! Wahoo!!!!! Her Ped had an epiphany over christmas and wondered if she just doesnt' have some severe asthma. He thinks that maybe her sats would drop here and there because she wasn't breathing in deep enough because of asthma and instead of doing some meds for asthma...we just did more oxygen. She started on an oral med for asthma as well as a nebulizer treatment and so far so good!!! She is doing awesome! Since all 3 boys have varying degrees of asthma... I don't know why I didn't think of it. But oh well... the end result is not hauling an oxygen tank around everywhere and she is happier too.

So I guess that is about everything in a nutshell. I really shouldn't let this much time pass. I need to get all my christmas stuff downloaded so I can actually post about it. Sorry.... I have been busy!

Scott has a blog

Scott decided to start his own blog about a Dad's point of view when it comes to raising kids with Special Needs. I hope you will all check it out and follow him. He is not normally a person to talk about how he feels so I was surprised when he decided to do it. I am really glad he is though. It helps to connect with other people during this journey of life. He did say he is going to be open and candid about it. Just so you know:)

www.scmc0310.blogspot.com

Enjoy!!!!

Update on the iPad

Just thought I would do a quick update on how things are going with the iPad.

Josh LOVES it. He is doing so awesome with it and I am so happy!!!!

(sorry for the quality of pictures and video. I really need to stop using my phone and use the actual camera!)



An amazing Christmas Miracle!!!

JOSH GOT AN iPAD!!!!

I have been on such a roller coast of emotions this Christmas Season... one that has had me laughing one moment and crying another.

On tuesday of this week a true miracle happened. No.. it wasn't Scott's Birthday, although it was a nice birthday surprise from him. (love you, Sweetie).

My amazing friend Alison Duffy (she deserves so much for doing this...if you know her make sure to tell her how special she is!) decided that she was going to do some sort of a fundraiser to get Josh an iPad. She understands how much it could help him, and how much he has been through his entire life. So she was going to set up a website to have people donate money towards it. On tuesday morning she called a friend of hers to find out if she had an suggestions or could help her word things on the blog she was going to create. Her dear friend told her to wait a little bit, she was going to make some phone calls before Alison got going on this. In less than an hour she called Alison and told her she had an iPad for Josh. Alison was speechless and really shocked. She called me to tell me and I just kept saying..holy cow...wow... holy cow... wow..... pinch me please..I didn't even know what to say! What an amazing surprise. At first it was unclear how this came about, but now I have a name of an amazing couple whom I of course have never met, who bought this iPad for Josh.

This sweet couple have no idea how they have just changed a life. Already... 4 days later Josh is picking up on some of the apps we have gotten on there and I can't believe how good he is doing already. We are still in the process of getting a communication program up and running on there, but mostly it has been due to lack of time. I also have been trying to get other mom's of special needs kids to give advice on apps and ect. It is such a busy time of year that it's been hard to get with the people I need. But we have it up and going for him for some basic stuff and he LOVES it.

I am still in shock that someone who has never met me, my son or my family would give such an amazing gift. It truly is a Christmas Miracle!

Thank you Alison and our Donor! We love you!

Another Official Diagnosis

This past Wednesday, December 7th, Josh had another evaluation. This was with a psychologist through Children With Special Health Care Needs (CSHCN). We have been waiting for a couple months for this appointment. We were having Josh evaluated for Autism or any other behavioral disorder. His Genetics Doc really pushed for this after our last appointment. 6 weeks ago I filled out several questionnaires and evaluations for Josh and mailed them to Salt Lake to be scored so they would be ready for this appointment. Josh's preschool teacher also did the same thing. I was really nervous that we would not be able to leave this eval with our diagnosis. You never know how Josh is going to be at any given time.

But I was worried for nothing. This appointment went so well I could not believe it. Josh cooperated PERFECTLY. He was 100% himself so she got an extremely accurate eval of him. He did not throw any meltdowns during the process so we were able to move through and get it done in about 2 hours. (He did throw a meltdown as we were leaving with head banging and everything so she did get to see that too..)

So....what was the outcome? Autism.

I was surprised where he scored though. In the official eval the doctor did there is two categories: Autism and Autism Spectrum Disorder. When we first met her and began the eval she thought he would probably be on the Autism Spectrum Disorder category. But as the eval went on and she began to score it at the end, he fell in the Autism category instead.

She was a wonderful doctor and I actually learned several things in that 2 1/2 hours about Autism. I am so glad to have her join our team of doctors for Josh. I can see that she is very knowledgeable and wants to help as much as possible.

So now the hard work begins.

Josh has had no intervention for Autism at all. I am currently battling the school district about his speech problems. As some of you may know.... the speech therapist at his preschool and I don't see eye to eye at all. I don't think she really wants to even try to work with Josh. I recently (finally) had Josh evaluated with the augmentative team through the district for a communication device of some sort. Their conclusion was that he does not need anything and instead Scott and I need to learn about PECS... which is comical. We have been doing PECS for over a year with him already. I did them with Trevor. Believe me.... I know how to do PECS. They aren't helping. The funny thing is... every single doctor, therapist ect that we see for Josh is STRESSING that he needs something to help him. Pretty much everyone is telling us that an iPad is the way to go. I am so tired of hearing this! I know how much he needs an iPad.... we just can't afford to get him one.

I am feeling alot of relief and anxiety about Josh's diagnosis. I feel relief because now we know. Someone who is an expert was able to tell me 'YES your child had Autism'. I have been on the fence about this for awhile. But now the anxiety is setting in. I know that pretty much the school system is failing Josh. I know that he needs some very specific programs and interventions to help him succeed. I am so sad because I don't really have anywhere that is specific to Autism to take him to now. He is too old for the preschool programs and that is all we have around here. I feel the weight of the world knowing that I am going most likely be left to figure out how to do this. I need to take on being his therapist, interventionalist, ect. I feel the weight of all this on my shoulders and I don't know how I am going to do this. It is going to take alot of research and time to figure out what to do to help him. He is so far behind academically. He does not know colors, numbers, letters, shapes, ect. Even without him being able to speak... if not for the autism he would be able to learn these things. But he is so far behind it overwhelms me.

So as soon as the holidays are over... I am going to begin figuring out what to do. I will do what it will take to help him learn and grow. It will take more time than I have been able to spend with him... but somehow or another I will find the time. I know I will. He is such a sweet boy that has had more struggles in his short 4 1/2 years that many people will have in a lifetime. But I will be his advocate and I will do what it takes.



In the meantime... here is a couple pictures of my sweet boy. I don't know why he happened to have his coat on in both pictures.....

And speaking of Autism.... here is my two special boys. These two have always had a bond that is different than anything I have ever seen. Isn't that interesting?

PH Probe Test and Results

This past Thursday and Friday was Kaitlyn's PH Probe test down at Primary Children's. I was dreading spending two days at the hospital with nothing to do but sit in a small hospital room. The day we had to check in was, unfortunately, the day of the massive wind storm that hit the Wasatch Front and caused millions of dollars of damage. I was worried about even getting down there. I made it OK and we got all settled in.

This is what the probe looks like. It is as small as an NG tube and went down her nose and into her esophagus. It measured the PH levels in two different places. We did have to have an x-ray to make sure the probe was in the right place. Of course within about 10 minutes of getting back into our room, she accidentally pulled the probe out. So it had to be placed a second time. She was thrilled. So was I.



This is the monitor that I got to carry around with me. Lovely. It showed the acid levels in both sensors. I also had to change the position on the monitor every time she laid down or was sitting. I also had to hit a couple different buttons when I saw her coughing, gagging or puking. It was a little more involved than I was thinking. Sigh....

To pass the time while there for 26 hours, we took many walks in a wagon. Kaitlyn really loved walking to the South Lobby to see this huge Train set. She would sit and watch the train go around and around forever. 

Her packed into the wagon with lot's of pillows and blankets since she still doesn't sit on her bottom by herself. Then we add the oxygen and monitors and a toy... and it was quite the production. But she was happy and it made it worth it.

By the time we left friday night.... we were both wiped out. Me more than her since I didn't ever fall asleep there. I was up for 36 hours straight. It was just not fun! Kaitlyn fell asleep right before we were discharged and didn't even move while I loaded her in the stroller. She is sitting straight up in this picture and sound asleep. Poor baby!

Since we just got done on friday, I was surprised to get a call from Dr. O'Gorman with the results today!!! I probably shouldn't be surprised since I sat with her in the hospital cafe on thursday night chatting with her. She knew I was nervous about this test:)

Anyway, it was good news! Well depending on how you look at it. Basically the test came back borderline. Molly (Dr. O'Gorman... we call her Molly though!) said that things could go either way. She knows how I DON'T want to do surgery to fix Kaitlyn's Reflux unless there is NO other options. So as long as I abide by some restrictions.. she let me decide if we go forth with a meeting with the surgeon, or re-evaluate in 6 months as long as we do the precautions she wants. Of course I picked the re-evaluate in 6 months.

So what does this mean now?

Kaitlyn will for sure continue to sleep in her swing because under no circumstances can she lay down flat to sleep. I will have to watch what she eats so she doesn't get more than one acidic food per meal. She will tweak her meds a little and we need to make every single effort to do her meds on time, every single day and not miss anything. If she shows anymore symptoms we will revisit this sooner than 6 months.

So.... this was the best news. We know she has reflux... we know it's not getting better. But to find out that we can buy some more time to hopefully let her tone get a little better is the best news possible. I feel like doing a happy dance!!!!

The only other significant thing that they found was some tachycardia (high heart rate) that they want me to call her Cardiologist about. Her sats dropped a bit on a lower rate of oxygen while she was asleep, but nothing significant. But we do know (as if I hadn't been monitoring her at home) that she needs to continue on her oxygen.

Plus as of today she has a slightly crappy sounding upper airway. Super. We will be continuing Winter Isolation.

Doctors, Doctors, Doctors!!!!

I swear if I counted up the hours I have spent at the doctor and pharmacy the last month, it would easily equal a part time job!!!!!!

Since I am a little slow at getting updates on here, this will be a good catch up post. Josh hasn't had many doctor appts, but getting all of his meds switched from wal-mart and Shopko to WalGreens has sure taken a TON of time. Very worth it, but still very time consuming.

The only appt Josh has had recently was yesterday at PCMC. He had his Dysphasia, or Feeding Clinic bi-annual appointment. And to tell you the truth I am still reeling from all that has come from that.

If there is one thing that has helped me survive all the medical issues going on in my house, it's the fact that Josh is doing well. His last appt in April, he was doing spectacular. He FINALLY was exactly where they wanted him for weight to height ratio, and BMI, ect. I guess that probably gave me a false sense of security with him and I have not been as vigilant as I usually am. He still had his bloated tummy issues, but Dr. O'Gorman said we would give him another 6 months to see how things were going. That was the only concern.

So much to my surprise, Josh has taken a dive in his health and I was a little shocked. He has lost a pound since his appt in april, and has not grown at all, not even a millimeter since that appt as well. Dr. O'Gorman is more worried about the lack of growth than the weight loss. It means he is seriously lacking calories and lack of growth is really worrisome. His tummy bloating is not any better, in fact it has been a tad worse. She thinks that milk is still the problem with his motility and bloating. She said she is pretty sure his intestines are swollen inside and making everything worse. Since we have run every blood test, he has been scoped, had biopsy's, ect...there really isn't a reason to repeat any of that. But we are once again taking milk away. He has been back on milk for over a year, so we can't remember what his bloating looked like before that. So it means another change in formula, as well as adding calories and water. Pretty much Josh is back on his pump 24/7 again. I will only let him off of it for school. Let me tell you how excited I am about that. :(

So.... we will have to go back in 3 months. It has been 2 years since we had to do every 3 month appts. Let's hope it doesn't become a permanent thing.

Here are some pictures of our funny boy. Sorry for the quality. I took them on my phone so they aren't the best. But it's all I take these days....

I woke up to this one morning. How can you not laugh at this boy?

Now for my baby girl. Wow had Kaitlyn had a rough few weeks. From catching a cold and ending up back on oxygen again, to her GI appt and 5 visits to her ped in two weeks, she has about had it. I wish things were easier on her.

We did one more trial run on Amoxicillin since she couldn't get over her cold. She is definitely allergic to it. Now we know. She also got  yeast infection that continued to get worse even with cream. She woke up with thrush in her mouth 4 days later. We were back to the Dr. AGAIN and got a new cream and oral meds for the thrush and yeast infection. Due to a mix up with insurance it took over 5 days to get the meds. She was miserable and her mouth was sore for days. It was not fun. She had a GI appt this week as well. She has maintained herself on the growth curve, but she didn't increase... so she is still not where she has been all along until her drop off last appt. She is scheduled for a PH Probe test on Dec 1-2. It's a 23 hour test that measures her reflux. If it comes back moderate enough, we will then meet with a surgeon about whether or not she is a candidate for surgery with her low tone. I am choosing to not think about that yet since it scares the crap out of me. The Nissen is major surgery. So I would rather not think about it. We also got the official NO on milk and soy for her. So thank goodness with her Feeding delay we are still on single fruits and veggies. We aren't going to make any changes until we get the results back from her PH Probe. And then she also had a sedated MRI scheduled for next week. This girl is keeping me so busy!!!!

As far as therapy goes and how she is doing...... she is eating the stage 2 pureed foods and doing well finally. She doesn't gag anymore and swallows nicely. We aren't going to do anything at this point until we can get some results back. She will continue to get her full 5 bottles a day of formula with not weaning anytime soon. She is walking slowly around furniture but not taking steps forward at all. She can kneel, but not sit flat on her bottom. She is a tad more stable, but still has some low tone issues really causing problems with her trunk control. We will just keep on keeping on with her.

And here is a couple pictures of her as well. I am not sure why I have so many eating pictures, but oh well....LOL!

(PS... Is anyone else having problems with Blogger?)