Wednesday, April 27, 2016

Potty Talk

Sorry if you were looking for that kind of potty talk....because today I am literally talking about a potty. :-p

Trying to find a potty for Isaiah has been a challenge.  I searched all of the local stores but steered clear of online for this one because I needed to see the hole and I needed to touch the seat/cushion itself.  Physically, although Isaiah is 2.5 years old, he is the size of a 7/8 month old due to his OI (it can cause shorter stature).  I don't know of any parent potty training a child at that age, let alone that trying to find a potty that worked with a 7/8 month old sized-tush was a challenge.

I wanted to forget the whole thing and look into a Rifton Toiling System but Isaiah's physical therapist (who would write the letter of medical necessity for the Rifton) wanted to search for a standard potty.  So I did, I searched and I searched and I searched.  Target.  Walmart.  Babies R Us.  Buy Buy was at Buy Buy Baby that I actually spotted a possible winner.

The hole looked smaller than any I have ever seen and the seat cushion is squishy!

 Plus MICKEY! (Link can also find it on Amazon. I used a coupon, so I got it for a dollar less than Amazon was selling it for.)

If I captioned this, because of the look on his face, I'd say he's thinking "OMG mama, don't take my picture when I'm sitting on the potty"

Isaiah is able to sit well on this potty with his femurs supported but his tush in the right spot on the hole.  Also, I am able to get my hand in there to wipe and pick him up until he is able to wipe himself and get himself off the potty.

But I didn't like that it lacked support/arm I thought we could make something during a physical therapy session using PVC.  One day we went to The Home Depot and grabbed quite a bit of materials...things I thought could work....

and brought it all home.  Next PT session, Isaiah's PT put this together:

Supports!  Although because I couldn't find certain connectors, we had to make it extra long...and guys, our bathrooms are teeny tiny and although we may use it in the living room, I wanted to have it sized to go in the bathroom because I'm specific and stubborn like that.  So back to The Home Depot I went, grabbed a few new connecters, and let them sit in their bag for a few weeks (the original rail was made in the beginning of March)...until today....because today I was feeling motivated to get it done.

I added a support to go behind Isaiah, making it structurally more intact and giving Isaiah something to lean against if he needs to....adding a piece of pipe insulation as well.

Looking good, don't you think?

I also found these adorable tiny underpants on Amazon for Isaiah to wear during training....clearly I'll need a few more pairs but this is a good start!

All in all I think we are pretty ready to potty train Isaiah when he is ready....but I believe he needs a bit more time to mature some. ;-)

In the meantime, While I was putting this together, I took measurements of everything in case someone else would need to make something similar for their child.

To make a PVC rail (with all 1/2" PVC and pieces), similar to this you will need:

1- PVC and tube cutter (I got this one while at Home Depot)
10- 2 foot pieces of 1/2" PVC (they were just $1.38 each and I overestimated with buying 10...but it gives leeway for mistakes)
4- Tee pieces
2- 90 degree elbows
6- 3 way elbows with 6 male adaptors if one of the holes is made to screw into (that's all I could find at my local Home Depot but the ones I linked look to be all the same)

You'll want to cut your PVC. You'll need:
3- 14" pieces for the width of the railing (one covered in a 13" piece of pipe insulation or pool noodle...I had both on hand so I went with the pipe insulation)
6- 10" pieces for the height (this would vary depending on the size of your child)
2- 6" pieces and
6- 4.5" pieces (for the length of the rail.)

And then piece it all together! (Pictured below, because describing this into words hurts my head. ;-)

and another angle...

I took this picture before pounding it all together with a mallet so the one looks a bit off the 90 degree angle...but it just needed to be pounded in ;-)   You could glue everything for good measure but so far just pounding it all really good has made it nice and tight.

And the best part?

It fits in our half bathroom just perfectly. :) I'll keep you updated when we begin this next phase of our lives.... but likely without pictures, because who wants to see a kid on the potty on the internet?  (if you answered "nobody", I like you!  I am absolutely an over-sharer in life...but that would just be too much for me.  I do want Isaiah to love me when he's an adult. ha) :-P 

Wednesday, April 20, 2016

Pop Pop

Two weeks ago I was all "hey, I'm getting back into the swing of this blogging thing"....for a week.  Last week I had a tough time sitting down to share anything because what who was most present on my thoughts wasn't Isaiah, it was his Pop Pop.

Last Thursday marked one month since my dad passed away.  I've had a hard time comprehending that it's been that long when it feels like just moments ago that I got the phone call from my sister.  And it was just 24 hours earlier that we spoke to him.

It's been hard to accept that I can't call him on the phone to talk to him about what salad dressing I had on my salad anymore :-p or that he's not involved in any more FaceTime calls with Isaiah....looking so proudly at his grand baby....and me.

He was a fantastic father.  He was supportive, loving, always offering advice... He was an excellent example of how to be a loving, compassionate, and patient parent.  

because he sure had to be patient with me... ;-)

I am so grateful that he was able walk me down the aisle and to see his first grand baby be born.

and that he put up with my obsession with the Backstreet Boys on the many car rides that he'd take me on to my friends' houses in my teen years...I'm grateful that when I smell cigar smoke, I am instantly brought back to Halloween nights of my childhood where he would wait on the sidewalk while my sister and I would trick or treat, cigar in hand, smiling at us as we ran to him with our loot.  (He never liked that I thought of him when I smelled that, but it was his yearly smoke and it really was fun trick or treating)...I remember how he'd always come in and check on us before he'd head to bed, always stood in our doorways watching us sleep for a few moments, and how I used to think it was creepy but now I do the same with Isaiah and completely understand the thoughts that went through his head while he stood there. ;-) (gratefulness and so much love)

Why do I share this now? Because as I reflect on recent days, Isaiah isn't asking for him as much as he was...but yesterday...yesterday he kissed Pop Pop's picture after asking to talk to him repeatedly.  I had a hard time not crying when he wouldn't move on so we went outside to blow bubbles...together we blew bubbles to heaven for Pop Pop.

and after we watched a bubble go high in the sky, I put the bubble wand back in the bottle for more and when I lifted it out a big breeze came and surrounded us with bubbles.  Pop Pop blew bubbles for us, that's what I said to Isaiah...and Isaiah said "Thank you, Pop Pop" while he giggled and tried to pop some of them.

Thank you Pop Pop, for being the best of the best. I will love you forever.

Friday, April 8, 2016

STANDING for the First Time

You read that right, my friend, for the first time in Isaiah's two and a half years of life, he got a glimpse of what it feels like to be upright with his feet on the "ground" (in quotes because we had to make a little adjustment there).  Isaiah's PT brought a gait trainer to our house to try!  Are you wondering what the heck a gait trainer is?  Well, it's a device on wheels which helps a person who is unable to walk independently to learn (someday, kids!).  It's slightly comparable to a baby walker but has a lot more supports available.

Initially, he was hesitant....but that seriously lasted no more than 10 seconds.  

In the words of Isaiah, Ta Daaaaaaaa!!! 

Look at those toes touching the ground...well...the top of our ottoman.  Even the smallest gait trainer made by this company (the Rifton mini pacer) is too big for Isaiah, but only by a few inches and in all honestly, we're not intending to use it to teach Isaiah to walk just yet...the purpose of this for Isaiah is to give him a safe supportive piece of equipment to get the idea of standing in and to do some weight bearing to strengthen the muscles in his legs (there's actually a sling that he sits on which takes some of his weight). The ottoman topper works to perfectly help his feet touch the "ground" and is actually perfect because it has a bit of give so he's not pushing on a very hard surface (like our hardwood floors).

He seriously warmed up to this new position and device so quickly...

And after a half hour in it, I went to take him out, only to get this reaction from him...

"Not yet, mama!" His first time in a gait trainer and he spent an entire HOUR in there.  It is very easy to get him in and out of it myself (and that's a mega perk in my book) and when the time comes that he wants to take steps, that ottoman topper is perfectly inside so he'd be able to walk backwards and forwards.

We have this on hand for the next week for Isaiah to continue to check out and we'll be doing some research/finding a DME (a company that can provide this) to order one for Isaiah sometime in the future.

It was so insanely amazing to see him like this today.  To see him enthusiastic, with his feet flat, goodness, he has come a looooong way.

Wednesday, April 6, 2016

Breathing Test

Yesterday morning, we ventured to DuPont for a breathing test in their PFT Lab.  (PFT stands for Pulmonary Function Test.)  Isaiah's been doing remarkably well in terms of his breathing....he hasn't needed his C-Pap, he no longer sleeps with his pulse ox (unless he's sick) because we don't need to monitor his oxygen levels....but last year we did this test and found out that Isaiah would benefit from oxygen when flying in an airplane.

Last year's test was traumatizing...for everybody involved.  Isaiah cried.  I cried.  Techs teared up.  The doctor held Isaiah's iPad to no avail....Apparently after we left that day, their team sat down and said "how can we do this better?" (I would have thought they would have chalked it up to a grumpy and overwhelmed one year old (and a crazy over-emotional mama)....but nope, they are awesome and decided to reevaluate things.  They now test one less aspect than they did before.  The mask isn't as invasive and intimidating (last year's mask was covered in extra sensors and tubes)...

When we arrived yesterday, it was like they were waiting for us as this was the real test of their changes.  We were a bit more prepared this time...Isaiah is a year older, and although he does still cry and fight things, he handles them better than last year...even if it is just slightly better.  He has his wheelchair and thats what I try to keep him in when he sees his doctors and does tests as it gives him a sense of being in control of the situation.  Daddy came along to give Isaiah a second, familiar and loving face as he sat during the test.  I also let him do as he wishes on the iPad, which is his favorite thing in the world...and that's really what got us through this year's test. 

The test is just ten minutes.  They basically lower the oxygen concentration in the mask and have him on a pulse ox to monitor his oxygen and heart level.

and once he was calm, he did beautifully.  They were able to get accurate, fantastic readings.  Isaiah sat mostly at 97%.  He did blip down to 93% once but it was so quick and not a concern.

and so we are so excited because ISAIAH DOES NOT NEED OXYGEN when we fly to Florida this summer!  Last year, along with his stroller, travel highchair, car seat, car seat base (which we should have checked...lesson learned), and our regular carry ons for us and Isaiah (cough cough diapers, toys, SO MUCH EXTRA baby needs), we had to carry an oxygen concentrator (which was much bigger than we were anticipating) and a bag along with it (which held our pulse ox machine, extra probes for that, oxygen cannulas, tubing, etc etc etc).  I am exhausted just thinking about it.

This time we are cutting the carry ons down, cutting the high chair (well that'll go into our checked baggage) and car seat base, and trying to go lighter....except well, we are bringing his wheelchair along with the stroller (and both will be gate-checked).

"Hello? anyone there? My parents will probably still overpack."

I keep seeing bringing both as a positive....At the airport, he can travel around in his wheelchair and we can use his stroller to carry our carry ons and car seat. ;-) We weren't planning on bringing his wheelchair, but with Isaiah's independence and our comfort level with Disney World (yep, we're going back!), we want to have it for evenings here and there at the parks where we'll plan to just have dinner and meet a few characters.  We also want it for around where we are staying so he can have some down time in it.  (Last year we'd put him in the crib to unwind midday and he would just roll around and yell like a maniac.  SO MUCH ENERGY from so much to see! The chair will get that energy out so he can get a good my dreams.)

Seriously though....can't you just picture him wheeling up to Mickey? (ahhh my heart is bursting)

Honestly, I was not happily anticipating going through everything to get to Orlando and home....but now that we don't need to bring oxygen because our baby is so strong??? Let the count down to summer begin...Bring on our Disney trip!

and thanks to the awesome team at DuPont/Nemours for changing that breathing test to make it less scary for our Isaiah.  You guys rock.