Our Family Whirlwind

Vacation

We have had an awesome week!  I got Austin back last weekend and Noah too.  We spent the week going to the pool, Meijer Gardens, the zoo and the Children's Museum.  We had just the right amount of doing things and down time.  We also had a wonderful 4th of July!  We were in the parade and then had a block party and fireworks in the evening.  I will post some pics.

I did have Parker's pulminology clinic on Monday and they said they think we should proceed with his tongue surgery.  So, I think I am going to have to revisit this during the week and see when we can get this done.  His lungs sound great and we are backing down a couple of his meds.  Yeah!!!  Not as many neb treatments is awesome. We are just going to go very, very slowly with the feeding issue and see how it goes.  If at any time he is showing distress, we will back down.  So far, so good though.  She just thinks this will help him and food is a huge issue around here.  He spends a lot of time in the kitchen pounding his head on the oven because he wants something to eat and I have to walk away or pick him up and keep him from hurting himself.  It is too stressful and it is ridiculous.  I am fighting to do the feeding now-because I want him to eat and I am not going to wait for therapists schedules to align and then start.  I know enough by now to know when it is dangerous and when we are ok.  So, forward I go...and I think we are doing a great job!  We are a good team, that little Parker and I. 

Good Stuff Going On

Parker's speech has been exploding!!  He can say a lot of words now-I am so excited.  It has been awesome to watch as he gets a new one.  We have been monitoring his oxygen and temperature for a week or so and started our own feeding trial.  So far-he is doing great.  He likes Cheerios and graham crackers and we even have started with some applesauce.  I just have to watch very carefully the potassium content because Parker's potassium is high and also the phospherous.  The Cheerios take longer for him to finish and it makes him happier, longer than the graham crackers.  Plus, they have the same nutritional content.  I am even thinking about being brave and trying thickened water and seeing how that goes for a couple of days.  If he does well-then he can start having it.  We have an appointment with his pulminologist on Monday as well to monitor this.

I am cleaning my house and organizing a bunch of stuff so I can enjoy our staycation next week.  I get Austin back tonight from his vacation with his dad and I also get Noah.  Charlie is off next week and we are going to spend a lot of time at the pool and the museums.  I am really looking forward to it!  It is going to be a great week.

Evening Outings

Tuesday night, upon Charlie's suggestion, we went out to Meijer Gardens to let the boys play.  It was a lot of fun!

 

Here was the Children's Museum...

 

 

 

New Plan

I just went over Parker's IEP yesterday with his therapist.  He has definitely come up in some areas-mostly he is at 15-18m level.  In speech and language he is still between 9-15 months.  It is getting better, though.  His feeding and self-care they didn't even score because he is still not even at a birth level right now.  That will come.  It is always really hard for me to listen to all of this.  I usually cry afterwards.  I need to know where he is-but it is hard.  He is making so many awesome strides and reaching sweet milestones-but it is such a harder road for him and makes me sad sometimes.  Well, the feeding makes me the most sad. 

Parker is definitely saying more "words" lately.  We were at the children's museum yesterday and he saw a car drive by and said "hello car".  It sounds almost exactly like it.

Ms Jane has some pretty optimistic goals for him to reach by November!  She wants him to be able to jump and clear the floor, kick a ball (which we have already been working on, and he is sort of getting it),  pedal his bike all by himself, walk up three stairs without holding my hand.  These seem so far away-but when we looked at his IEP from November, it was to walk five steps unassisted-and now look!  He is practically running!  So-time is what is needed.  He is just such an awesome little boy and I love him so very much!

Struggle

I have really been struggling the last few days with Parker's health issues.  He is doing great with walking and learning new sounds.  That is awesome, and I am trying to remember to be grateful and stay in this moment.  It is hard to do, though.  The whole food issue has been so hard and I hate, hate, hate it.  He wants to eat-so bad.  I have to say no.  I have to tell my child I won't give him any food-and I do not like this at all.  I am trying to do the right thing and have really been hesitant to do this surgery on Monday.  I talked to one of his therapists and the doctor again.  I am going to push it off until later in the summer-if at all.  The doctor isn't really sure this is going to help.  It should be a simple in and out surgery-but not for Parker.  It will be an all day, under general anesthesia.  I am not going to subject Parker do a junky day in the hospital to maybe have this work-maybe.  I do feel a lot better talking to his therapist and coming up with an in the mean-time plan.

Here it is...I am going to take his pulse-ox and his temperature in the morning and keep a log.  Also, will do this before bedtime.  Probably for a couple weeks?  Then, we are going to meet for a feeding evaluation and go from there.  That way-if anything is funny or different, we will know why and have a base line to go from.  I would feel more comfortable putting him through this if I had more convincing arguments that this is the way to go. 

Also-I have been having a really hard time with his health issues in general.  I have to take him in for more labs on Monday.  I keep thinking that we have dialysis as an option after these kidneys are used up, but I don't really ever let myself go to the graveness of all of this.   This whole kidney disease is hard sometimes.  When I think of his whole life ahead of him and all this junk he has to go through.  So many things that have come up in time.  He is such a happy baby and so very, very sweet.  He is coming into his own personality and is very funny!  It is hard not to think about the reality of his mortality because of this.  This week alone-a little girl who had arpkd passed away over the weekend.  It is so heartbreaking.  I have a very good friend who has gone through the transplant with her son and is now going through the process with her daughter.  I have another friend who lost a little boy last year and is going through the same thing again.  It is very hard sometimes-to see the light at the end of the tunnel.  I have gotten so angry with God in the last few days...why?  It is a question I don't exactly expect an answer to.  I just am so angry and sad at what PKD does to families.  It is awful and scary. 

I would say I do a pretty good job at staying where we need to be mentally and emotionally-but there are times like this when it is hard.  It is hard to see the pain inflicted by this disease and the heartache of the families involved.  It is hard to put my son through all of this-and it is necessary to keep him alive.  Just having a rough day...

Last Day of School

Today is the boys last day of school!!  I officially have a third grader!  Cannot believe that.  Also, another year of preschool for Jackson.  It has been a great school year for Austin.  It has been a little rougher of a ride for Jackson-but finding the right fit is awesome.  I am really, really looking forward to spending time with my boys over the summer.  We are ready!  Time to chill at the pool, go to the zoo or the children's museum.  Stay up late and go to the playground. 

I am scaling back on Parker's appointments and therapy.  There is a playgroup at the sensory playground at his school and we will go there for Parker and Jackson probably once a week or every other.  Austin loves to help his brothers and it will be fun.  Other than that, we will do our regular labs and see how everything goes.  I want to enjoy this summer!

Funny Boyisms

Funny little things I have heard from my boys this week...

Me-Austin, it's time for a haircut.  Just to have them shape it up.

Austin- I will only let them cut my vangs.

Me-You mean your bangs.

Austin-That's what I said.  I call them vangs.

Jackson, while pretending to be a baby skunk.-Little baby skunks are clean and smell precious and

            sweet, not like big, smelly skunks.

Fun Day

Friday was Austin's fun day at school.  It was a lot of fun!!  I filled up 100+ water balloons for the festivities.  I love watching my little guy having fun with his friends.

Austin playing the balloon toss

 

Sensory Therapy

We got a new pair of headphones for Jackson today.  I had an appointment with his social worker from school-who came for a home visit, no less, to make it easier on me.  We talked about different strategies to use with Jackson to make things easier on him.  The headphones block out loud noises-which always lead to major meltdowns.  This would be why we don't go out in public very often-too many people, or out to dinner-too stimulating.  This would also be why he cowers in the corner covering his ears and crying every time I vaccuum or blow-dry my hair.  So, I am very excited about this...this is supposed to make Jackson feel better and more centered.

We also are trying these chewy tube thing for Jackson.  He has already declared this the "coolest chewy thing ever!"  Hopefully if I see him getting anxious-we can supplement with this and avoid the PICA issues more. In the last few days, he has eaten two candles, a pencil, foam pears and I think a coin.  He needs stimulation in his mouth-and hopefully this will do the trick.  We are checking into a weighted blanket to help with night time.  We have a new routine that includes some heavy lifting (a bag of books) to physically tire him out.  There are a lot of new resources about sensory integration that I was given this morning and I am very excited to get some help.  We have another year in the special education for Jackson.  They have him with the IQ of a five year old-but the emotional maturity of a two year old.  Apparantly it is common for really bright kiddos to have some serious issues like this-so that makes me feel a little better.  Our goal is to have him in our regular kindergarten class...after we have helped him learn how to cope better and given him these tools.  I am so very happy about this.  It has taken a long time to get proper help for him-and we have finally found it.  Next year they will also address the food issues more.  Little worrisome for me because he is a failure to thrive and not gaining weight-but as long as he is getting his nutrients through his special formula and vitamin water, she said not to worry right now.  Yeah!

For the summer-I think we are going to sign Jackson up with the Easter Seals program.  They have a little camp called Young Kids Sensory Group.  It is a weekly session that meets in the morning-no more than seven kids.  This is PERFECT.  They work with an OT and music and movement.  I am really excited.  Not excited that it costs $250 per week...but we are working on some scholarship applications for at least some of it.  I think it is necessary to have Jackson in this program through the summer. 

My Favorite Show

Ok, so I have been watching Jon and Kate Plus 8 since before it was wildly popular.  Since the kiddos were babies.  I'm not sure how it happened-I just got sucked into watching it and found myself making sure the boys were in bed by 9pm on Mondays.  Anyway, I find myself being very sad for them-all of them.  I can see the anger and resentment, and most of all the sadness on all parties.  When I first heard about their struggles-I didn't believe it.  I know Kate pushes Jon-but I can also relate.  When it comes to four boys and two with special needs...I need my spouse to step up and help without me having to tell him what to do.  If you see something that needs to be done-DO IT.  I am running around to a zillion appointments-some of which keep our son alive, literally.  I have meds to draw up, feedings to give, breathing treatments to give-four times a day, making sure meds are ordered in a timely way, and the list goes on and on.  I feel like I should have a nursing degree already.  So, I can relate to Kate.  And, maybe it's a guy thing-but sometimes they do not make the best parenting choices.  I feel like I am always on his back about how things are supposed to go.  For instance, walking away from Parker in the bathtub and me getting livid-this is not me being an anal new mother.  This is a def-con five emergency if Parker gets water in his mouth.  He loves to do this-but you have to have a hand on him-and even then it can still happen.    I see Kate doing everything she can do provide for her family.

I can also see Jon's side-he made very poor choices.  I have been on the receiving side of this in my marriage as well.  The anger and resentment builds and the walls between you go up.  I also see Jon's sadness and regret.

I hope they can find their way-they are a beautiful family.  It would be so sad that the thing that made it possible for them to stop struggling financially would be the catalyst to end their marriage.

I wish them the best-because I love this show and I have become very fond of their family.