Success can be most challenging

It's been another crazy week in the Harris household.  Braden yet again suffered a double ear infection and missed the entire week of school.  Boo!!! Grayson has hung in there and has had some drainage but not bad.  We had two visits to the Peds office.  One on Tuesday when Braden's ears were fine.  Second time was Wed. for Grayson's 3 year check up and catch up immunizations for Braden.  Well Grayson's check up went fine but Braden didn't get his shots because his ears decided to flare up.  Grayson's well check up included NO shots this time.  He was happy. :-)  He is 36" tall and 27 pounds.  I think Grayson is gaining on Braden a little in height but he is still small compared to his peers. 

Braden's g-tube removal went well but it has been icky for us.  I finally found a bandage tape that doesn't flare up his skin so that's a plus.  Anytime I do not get it pressure packed just right he leaks all over his clothes.  Not just a little either.  If he drinks water it seems like most of it comes out. :-(  So the jury is still out on if this will close on it's own.  It has gotten somewhat better but I think it's just because of how I'm bandaging it not necessarily because it's actually healing.  Only time will tell.

So a while back I had said Grayson's favorite type cup was being discontinued and at some point we would have to force a switch.  Well we have held out long enough and bit the bullet on Thursday to change him.  17 hours with no milk and he started drinking out of a pediasure bottle.  Then I tried a small Thomas the train cup with the pediasure in it so he could smell it and know it was something he liked drinking.  Well that was working and we got all excited but the quantity he was willing to drink just didn't pick up.  Once the milk started spilling it got worse and worse.  He acted like he was on fire every time some spilled on him.  Gradually we went down hill and with only two wet diapers and the 24 hour mark fast approaching we had to compromise.  So I decided to attack while he was asleep. lol  That's right asleep.  I took a NUBY cup not his old one but similar (which by the way he was not a fan of and wouldn't even go near except in therapy)  and put it in his mouth while asleep.  He took off and sucked down over 8 ozs.  Could not call it a victory just yet because his senses were tricked.  Once awake he wasn't having it so I literally broke all the rules and forced it.  Once he got going again he sucked it down.  Still not a victory.  After that he wanted nothing to do with it even though he had taken it awake.  Night comes and it's time for bed.  I take up the Nuby cup and he saying NO all the way up to his room.  I make him lay down and he goes nuts.  So again I force the cup.  Once he takes it he drinks it like he's still dying of thirst or hungry and no problems.  He goes right to sleep after and all is good again.  Gets up this morning same fight and then finally I can shout success.  When getting in the Van to go get his favorite McD's biscuits he takes the cup.  Whew!!! that is how bad this poor kids sensory issues are... he just can't deal and sometimes you just have to push him off the cliff and hope he can fly.  Obviously forcing anything other than a sippy cup isn't going to work.  But we couldn't let him dehydrate over it either.  I just hope Nuby sticks with this design for a while. 

Nana and Pop Pop brought down a gift for Grayson.  He will be turning 3 next weekend.  Wow!!! these kiddos are growing up way too fast.  They brought him a Thomas the train rocker chair and he absolutely loves it.  He got in it immediately when Nana brought it in the house.  He's been sitting in it a lot and thinks it's the greatest chair ever. 

I went through some of the boys summer clothes and was shocked that Grayson can actually wear some of the 3 T shorts.  I have several clothes that are too small and Braden can't even wear last years stuff.  I have only a few items he can wear shorts wise so a shopping trip is in order soon.  I just wish they liked trying on clothes so I could really know what to keep and what to donate. 

Braden's nutritionist suggested a Multi vitamin that's a liquid for Grayson.  After our order came in I got really excited because it's a really great supplement.  I was worried though because you have to give 15 mls and it's a really thick liquid with lots of flavor.  Good flavor except for the bit of iron after taste and amazingly they are both fine with it.  Grayson is especially surprising because the whole reason why we bought it is because we want to get him off pediasure.  There are two reasons for this... one is pediasure is only a supplement and you have to drink more than one to get your daily needs.  Two Grayson's appetite is not good when he gets that high calorie drink.  We wanted to make sure his nutritional needs were met without having to sacrifice his appetite and his MOOD needs to be good.  His autism behaviours stand out much more when he is surviving on little nutrition which is to be expected of anyone whether they have autism or not.  I decide I wanted Braden to be on the vitamin supplement as well because he's been sick for so long and he really doesn't eat what he should when he is sick.  Mostly because the drainage makes him gag so certain textures like vegetables just don't work for him.  This will also take some pressure off of me to push him so hard.  I obviously will always offer and try to get the good foods down him but some days it just doesn't happen. 

If you order supplements The Natural online is a great place.  They package really well and their regular shipping always gets to us with a few days.  It's really amazing and convenient.  The supplement the boys are taking is called Animal parade and comes in a berry flavor. 

Well the boys need me so I have to go...

Great weekend

Had a wonderful weekend with our boys.  I can't say enough how blessed we are to have two boys who are always soooo good especially in public situations.  They are just the sweetest.  We didn't do anything fancy this weekend.  Just stayed home and appreciated having each other.  We had a really nice dinner and some sweet cards.  Played with the boys favorite trains and enjoyed some time on their swing set.  We have a nice young teen who has offered her assistance this summer.  I am so excited.  She is going to help us on days when we want to go to the zoo or wade pool.  Or even when we meet up with friends.  It will be such a big help to have someone who can help with teaching Grayson and Braden to stay with us.  They do pretty good now but the distractions can sometimes make one of the run and I mean literally off.  Braden's not so hard to catch but Grayson is like a bullet.  He is tiny and fast.  Makes me a nervous wreck.  Especially in larger crowds like at the zoo or even around water obviously I need an extra pair of hands.  So many friends are in the same boat so it's hard to help each other when we all already have our hands full.  We have never had a babysitter due to all of Braden's past medical concerns but we are finally reaching a point where that may be possible.  But for now just some occasional assistance and Nana providing a few date nights here and there will have to do.  It's more freedom than I've had in a long time so I'm very happy. 

Here is an adorable video of Grayson singing to his stuffed animals.  The ending is absolutely hilarious... we loved it.

 

 

Oh Happy Day!!!

So excited for Braden to get his G-tube out.  Such a big milestone for him.  He has no regrets that for sure. :-)  2 out of 10 g-tube removals require surgery to close the site.  Braden's chances for surgery are higher due to the length of time he has had the g-tube.  Hoping since he seems to have a special gift for healing that surgery won't be required. 



Stuffing his face because we had a late lunch. :-)

IEP meeting and another milestone event

Yesterday was a long but productive day.  Wed.'s usual therapy marathon went well.  Both the boys did a good job despite having been out for over two weeks.  Grayson has definitely regressed on feeding.  He now thinks it's ok just to eat biscuits all day and won't eat his other foods.  I am trying to get him back on track but it's not going to be easy.  Once he gets something in his head it's a huge battle.  He is also refusing to switch cups even though I know we can't get the ones he likes anymore and we are down to just 3.  He keeps chewing them up.  So we may have to deal with letting him get dehydrated to force him to drink out of something else and believe me when I tell you this is not a good option.  I went through the whole withdrawal thing before with him and it is painful for him and for us. 

Braden also had his transition meeting for special needs Kindergarten.  He is doing so well.  They continue to give us very positive feedback on how quick Braden has picked up using his ipad to communicate.  It's not just matching anymore.  He told his OT he didn't like it when she wanted him to do some messy work.  He has learned the phrase and scrolled right to it to tell her. :-)  Pretty awesome.  We also got him a new Ipad mini which is strictly for his education and communication.  We do not let him use it for games or play.  The school is doing the same thing.   We also learned how to lock the ipad so that he cannot get out of the app we have chosen for him to use.  Which is also great.  He has improved in all areas of his IEP and has either reached goals or is close and although we haven't made any specific changes we do have another meeting with his Kindergarten teacher in Oct. and plan to make changes at that time.  It was funny how we ended the meeting with another big discussion about Braden's in ability to talk.  They don't think he has autism either.  I am so tired of trying to guess or find the right path for an answer to that question.  I'm sure it'll be some off the wall thing that who knows what the end result will be ... It's like his in ability to crawl and raise his head well way back when everyone thought he was just delayed and then finally we found out his hips were messed up.  I have such a hard time with waiting to know what's the deal because if I don't know then we can't resolve or try to fix it.  The thoughts also loom as to will he ever have his voice.  In the end it is what it is but worry is still going to happen. 

Tomorrow is a big day for Braden.  He is getting his g-tube removed.  We will be posting pictures as long as all goes as planned.  We are very excited to have reached another goal reached and a big one at that.... :-)

Grayson's IEP meeting will be May 20th.  I can't believe summer is almost here and we are preparing for the next school year.  I have got to start thinking of IEP goals for Grayson.  Whew!!! I'm busy.  I also have a ton of paperwork to complete both for school and for the sleep study.  So I need to go and get on it...

Glad to be home

Although we have been so glad to be home this week it has still been a little crazy around here.  First off Braden seemed to be doing great when we left the hospital.  However, the next two days he was miserable.  I guess his digestive system had shutdown and after the he's not eating enough comments I kept feeding him so we could leave.  Well that cost the poor baby dearly.  So bad he had to be vented by pulling out his gtube several times and he literally laid on the couch most of the first two days.  I gave him miralax that didn't work.  I gave him a suppository.  That didn't work.  Finally I decided it was time for some diet changes.  For an entire day I had fed him only applesauce, Greek yogurt and a few times added a tsp of coconut oil to his yogurt.  By the next morning he was feeling a lot better.  So slowly we added back some of his favorite foods and since then he has been self feeding like crazy.  Which is AWESOME.  I have always had to feed him at least half of his meals but the past few days I have barely fed him a few bites.  He has done it all himself.  So despite the troubles there have been some good things.

Sunday night Grayson was miserable.  We knew he must have a double ear infection.  So on Monday off to the Dr. we went.  Sure enough we were right and one ear was so bad she advised me that it may burst and not to freak if it does... :-(  Thankfully, that did not happen.  He has been sleeping a lot but overall seems to be feeling better. 

Yesterday Braden had a mysterious rash pop up all over his back.  It's still there and with the advice of the Dr. as long as it doesn't spread we figure it's either a heat rash or a reaction to the linens at the hospital.  Thank goodness it wasn't an allergic reaction to the meds.. 

We have been couped up in the house but so glad to be home.  I think the boys are ready for things to be back to normal as much as we are and maybe this weekend we can at least get out in the yard.  We plan to go back to school and therapies next week and hopefully we will not catch anything else before school lets out for the summer.  Both boys have their IEP transition meetings soon.  Braden's will be next week and Grayson's the week after. 

Oh and to our friend Dana the boys loved their cards and sticker :-).

Today I have cleaned house all day.  The boys have been kind enough to let me with the exception of throwing all their toys everywhere. lol  But that's ok.  I don't mind the clutter as long as under it is clean.  Makes us all feel so much better. 

Home sweet home

So we are finally home.  Grayson hugged and hugged on me and I hugged him too.  It was such a happy reunion.  Braden hugged on Grayson and they watched a little Toy Story together while I fixed lunch.  Now they are both napping.  Such a great feeling to be home and be able to just be together.  I really missed Grayson and I really hated seeing Braden sick again.  But I have to say this trip wasn't nearly as dramatic as the last and I can only hope as he grows it will be less and less dramatic when he gets really sick.  Or better yet doesn't even have to go to the hospital when he gets anything more than a cold. 

Our experience at the hospital this time was a little different.  We have told our story before but I cannot express how thankful I felt telling it this time.  It was so amazing how many of the nurses and RT's and others were inspired by our story and how thankful they were for my telling it.  I also shared some of my friends adoption stories and believe it or not their were several people who were looking to adopt and they were inspired and encouraged by those stories as well.  Many told us how they see alot of tough things that are hard to see and it's nice to hear the good stories especially about the strong babies born so early that come out doing so well.  They were so impressed with Braden and glad to see how happy we are with him just the way he is... and G too.  I wish they could have met Grayson as well but he was sick all week and that sure did make things even tougher. 

Thank you again for all of your prayers and well wishes.  Braden received a lot of ecards and he was so happy when I read them to him.  Braden will continue to be on an antibiotic for 5 days and a steroid once a day and breathing treatments as well as CPPD treatments 3 times per day for 3 days.  So we will be keeping him home for another week.  Which will probably mean Grayson will have to be home too.  He still isn't completely over his illness but close. 

I will try to post some of the pictures from our hospital stay that those of you without FB accounts did not get to see.  As well as some this week of us being us and back to our so called normal. :-)

Going home

Yahoo we are going home this morning in the rain.  Hoping we don't get slowed down by the music city marathon traffic.  :-). Thanks for all the prayers and checking in on us.  We can't wait to be together again and I know Grayson will be excited to have his Mommy and brother back.