Monday, June 27, 2011

Macy Pictures!

We don't have a lot going on right now (which is a good news is good news in our world!) so I decided to post a couple recent pictures of Macy.  She is getting so big, and is all over the place!  I love each stage she goes through as she grows; watching her learn and discover new things is so amazing to watch!  She is so much fun, and is such a great kiddo!  :)  There is only 1 appt. this week which is her feeding therapy appt. on Wed.  The one last Sat. went great.  Her Daddy took her and he said she ate awesome for the feeding therapist!  Her favorite right now is bananas!  She is still scheduled to get her G tube next Tuesday.  I will update again after we get home from the hospital.  It will be either a 1 or 2 night stay depending on how she is doing and how she is tolerating the feeds.  So early Happy 4th of July everyone; I hope everyone has an enjoyable, and safe holiday!
Love that smile!

Macy showing off her teeth!

Macy rockin her Tinkerbell PJ's

Macy reading a book in her tent...she loves books!

Macy loves playing in her tent

Macy standing up playing with her music table

Wednesday, June 22, 2011

G Tube

We had a really good appointment today with the Pediatric Surgeon.  We have scheduled Macy's surgery to get her G tube put in on July 5th.  They showed me what the "button" looks like today, and it is really pretty small and flush to the skin.  They don't do the kind anymore where you have a tube hanging out or anything so this is really discreet.  No one will even know that she has it when she has clothes on.    Not that I would care if people could see it....I have gotten use to the stares from strangers when they notice her "floppy thumb" flopping around as she is playing with a toy, etc.  Anyways, it looks pretty easy to use and I can't wait to start getting some full nutrition into Macy and not having to worry if she is getting enough!

The surgery itself will only take about 20-25 minutes, which is nice because I am sure I will be a nervous wreck the whole time.  She will also have to stay the night...maybe 2.  They need to make sure she is tolerating the feeds because a G tube can make reflux worse, etc.  They will also have to train Adam and I how to use it, and change the button out eventually.  Once healed it will need to be changed every 4-6 months.  I am looking at ordering some "button buddies" to decrease the granulation tissue and leakage; and those should help.

A nice end to the appointment was that usually Macy goes to Devos in Grand Rapids for everything, but this Specialist is out of Bronson Hospital in Kzoo; which is where my husband (Adam) works.  It was nice to be able to meet him for lunch today after our appt. so Macy could spend some mid-day time with her Daddy!

Macy has a feeding therapy appt. on Sat. and next Wed.  I actually think that is her only appt. next week so that is good.  I love it when we get a week off of appointments or only have 1; then 4th of July and fun times camping with the family!  Can't wait!
Macy being silly with her dress hanging off her head!

Take care,

Monday, June 20, 2011

Little Victory's!

With all the stressors that come along with Macy's disease; I have found it is very important to celebrate the "little victory's" that she has.  It gets to be so easy to focus on all the negative things, and easy to overlook the little things.  

With most parents and children it is a natural process.....hunger = eating & thirst = drinking.  Their babies suck on everything...their binky's, thumbs, bottles, toys, etc.  As sucking is an important part of oral development.  Macy has never been big on the binky; which is fine.  But after she got home from her hospitalization in early March she never sucked on anything again while awake.  Nothing!  She puts toys in her mouth, chews on them, and moves things around with her tongue; but never would "suck".  I think she was too afraid of the pain of her reflux coming back.  And it was a strong fear for her.  That learned behavior just got worse over time.  

Anywho, last night I was giving her her meds.  Prevacid is a solu-tab pill, and her Zantac we give to her with a syringe.  One thing Macy LOVES is water.  So I can usually get her to take her meds better if I give her some water afterward.  If I tell her she will get water it motivates her to swallow her meds faster because she wants the water.  I usually squirt water with a syringe in both cheeks, upper teeth, lower teeth, etc. kind of cleaning out the taste of the meds in her mouth.  She thinks it hilarious.  As I was doing this yesterday, she actually SUCKED on the syringe like you would on a straw.  So every time she sucked on it I squirted water in her mouth.  I couldn't believe what I was seeing.  Sucking???  Macy???? OMG!  She loved it, and it is a huge step forward in my mind.  I was so excited and I hope this is the beginning of getting more liquids in her.

She did get her 9 month pictures taken this weekend.  I made the mistake of making the appt. before her afternoon nap so she was tired and would not smile for the life of her!  It is usually so easy to make her smile.  So we did not have very many pictures to choose from, but atleast we got something.  We had a very nice Father's Day at Macy's Grandparent's house with her Aunt's, Uncle, and cousins.  Poor Bela was left home since we had to stop by the mall on the way home so she missed out on playing with her canine cousins! 

I think I am all set for Macy's Birthday presents now.  I always buy everything early, but I just realized that it is time to start thinking of her birthday party.  I can't believe she will be 1 soon, and I can't wait for her birthday celebration we will have.  Now I just need to decide...Disney Princess or Tinkerbell and Fairies?   It will definitely be Disney though....all you that know us know we love Disney World....Adam and I had our wedding there which was truly magical, and we love going there on vacation as much as we can.  I can't wait until Macy is 2 or 3 so we can take her...I know she will love it as much as we do!
Macy in the hospital right after she was born! Our little angel was 5lb. 9oz. and 18 inches long!  Seems like just yesterday that we brought her home!

Macy does have 2 appointments this week.  We meet with her Pedi Surgeon about her G tube on Wed., and she has her 2nd feeding therapy appt. on Sat.  Let's hope it goes well!

Take care

Friday, June 17, 2011

Ignorance is bliss...or is it?

So Macy had her echo done almost a week and a half ago now.  No word yet from the Dr. office.    I should probably call to find out the results, but a part of me just wants to believe since we haven't heard anything that that means everything is fine.  I'm afraid if I call it will be bad news.  I guess I will just give it a few more days then it will be time to find out.  

We received the report from the hem/onc appt. about her blood work and it freaked me out for a minute.  It says her neutrophils were low and that she had mild neutropenia (I believe those are the white blood cells that fight off infection).  However, I looked at her actual #'s and they are in the normal range.  I brought this up to her Pedi today and she also said that those numbers are in the normal range so I am hoping her hem/onc Dr. just made a mistake when she wrote the report.....I will have to contact her to see.  Sometimes it would be nice if my brain didn't know the things it would be very nice to turn off knowledge sometimes.  I guess in order to cope I have made myself not think of what is to is something that is far off in the future sometime.  But when I saw that report it made everything so much more that far off future was starting to happen now.  That was not a good feeling.  Let's hope that it was a mistake, because I am not ready for the realities of this disease yet.

Still working on the appeal to the insurance company to cover her complementation group testing.  Her geneticist gets back from vacation on Monday so I can forward them all the info. I have acquired this week and hopefully we can get that going.  My back up plan is we have been invited by the NIH to participate in a study they are doing on FA patients and cancer.  They will do the testing for free if we join the study; however, their timeline for getting this info. more than likely doesn't match ours since it is for study purposes; but it is worth looking in to.  

Macy had her 9 month well child check up today.  Wow, 9 months....that is crazy.  As usual she was very charming and happy as can be.  Her stats are as follows: length 27.5 inches (50 percentile), head circumference  43.5 cm (40 percentile), and weight 14lb. 14oz. (1 percentile) <------yes that says 1.  She is long and skinny.  Her Dr. said she is not too concerned because her dad and I are both petite ( I was so little when I was a kid I wasn't even on the growth charts), and she has a lot of good fat on her cheeks, arms, legs, tummy, and back.  She said she looks healthy and is holding her own; so that is good!  :)

Next week Macy has her appt. with the Pedi Surgeon about her G tube.  I am hoping we will be able to get that in asap; especially before her hand surgery in July because I know she is not going to eat well around that time.

I hope everyone has a great weekend!  The weather has been so nice here, and Macy loves being outside.  She is getting her 9 month pictures taken tomorrow so let's hope she is all smiles for those!  

Take care

Wednesday, June 15, 2011

Macy had her 1st feeding therapy appointment today.  She did a pretty good job eating from a spoon.  Usually she loves drinking water from a little open top cup, but today for some reason she wanted nothing to do with it!  :)  It's funny how kiddos make you look like liars sometimes!  You tell someone......oh yeah she does awesome with _________; then you go and show them and your kiddo looks at you like "what" I'm not doing that.  ha ha!

The feeding therapist said her oral motor functions are normal, etc.  Our issue is getting her to like eating again (since she has such a bad association with it from her reflux), and to increase the volume.  Since this is going to take many months we are going to go ahead with our appt. with the Ped. Surgeon next week to discuss getting a G tube put in.  It is a hard decision to make but I think it will help so much, and take the pressure off eating.  We can give her all her nutrition via feeding pump throughout the night so we can sleep too (which will be soooo nice), and then no pressure during the day and we can concentrate on  her eating skills.  Right now we cannot go anywhere or do anything or it interferes with her eating schedule. We want her to eat as much as possible so I devote my entire life around feeding Macy, and making sure she takes her naps at the right time of day so she will eat.  All in all I think it will be a good choice for us to get the tube; and will increase our quality of life too.  I would do anything for her; but I must admit I am physically getting burnt out from getting so little sleep in the past 9 months....a body can only handle so much and mine is almost to it's point of exhaustion.  

On a side note, we bought Macy this little pop up beach tent today.  We put it up in the living room and she had a ball rolling around in it.  It will come in handy for when we go camping, and go to the beach.  She will have her own little mosquito-free room to play in and to keep out of the looked so comfy I am thinking of ordering a beach cabana for us too!  I have some pictures of her in it so if I get time this week I will post them!

Sunday, June 12, 2011

I have about 40 minutes before it is time to go feed Macy so I figured I would pop on and update tonight since I will be busy tomorrow.  I have many people to contact tomorrow regarding the appeal to the insurance company.  And I have a lot to put together for it.  Sometimes I am surprised that my brain is still working.  It has been working overtime and it's hard to turn it off.  I really need a vacation from my thoughts.....I wish I could take up meditation, but I am pretty sure I don't have the patience for that.  Anywho...

Macy has her first hand surgery scheduled for July 29th!  That will be nice when that is over.  She has 2 appointments this week.  Feeding therapy and her 9 month well child.  I can't believe 9 months have passed already, and she is getting so big!

I was reading another FAmily's blog the other night (FAmily: Fanconi Anemia family), and something the mom said really resonated with me.  They are starting the phase in the FA disease where their daughter's bone marrow is almost in complete failure.  She is 7 years old, and will need her transplant very soon.  But her mom said that it feels like when she is watching her daughter it is as if she is watching a "living memory".  Like she is taking mental snapshots of these moments and locking them away in a special place in her mind to pull out later when she is going to need them.  I totally get that.  I have been doing that with Macy a lot lately.  I want to hold on to every smile, laugh, giggle, and babble and never forget it.  I want to hold on to the sound of her laugh, the smell of her hair...everything.

So tonight, if you have children; just hold them a little closer.  Give them some extra hugs and kisses!  Tell them how much you love them a couple more times.  Because none of us really know how much time we have.  There are no do-overs...this is it!  We need to enjoy every minute, and laugh a lot more!  Take care

Thursday, June 9, 2011

Insurance: can't live with it, but you can't live without it either

Health Insurance is such a stressful thing in life.....when you need it.  When you don't really need it your like; wow, we have pretty good insurance.  A copay here, a copay there.  Maybe a prescription or Dr.'s visit every now and again.  No biggie.  When you need it; I mean really need it it all of a sudden doesn't seem so great anymore.  Everything's a fight and they don't want to cover anything.  Why can't they just pay for what they are supposed to?  Don't they know children's lives hang in the balance?  I guess they don't care, and that's really too bad.  

Anyways, my ramblings are a result of another denial of coverage.  This time they are refusing to pay for the testing to find out what Complementation Group Macy is in.  Finding this out is soooooo important for her treatment.  What group she is in plays a huge role in when her bone marrow will fail, and how early she is going to get cancer, and what cancers she is more prone to getting.  Does she have only a 8%-10% chance of living past 10 years, or a 20%-40% chance?  That's a big deal.

UGH!  Another added stressor.  As I type this I look over and can't help but laugh.  Macy is rolling around with a huge smile on her face slapping the bottom of her foot!  She loves playing with her feet and sometimes I catch her pulling her sock off, and she holds it in front of her face and starts yelling at's so funny!  :)  All it takes is one look into those beautiful blue eyes and my stress melts away!  Love her so much!

Okay enough venting, I just had to get that off my chest and now I can spring to action.  If they want an appeal; that's what they'll get.  30 pages showing research and statistical evidence as to why this information is so important.  If that fails; next step is to show up on their door step!

Time to go play with Macy now.......and also today is my hubby's birthday!  Happy 32nd Birthday to the most wonderful husband in the world, and even a greater daddy!  I love you and Macy so much!  You both are my heart!

Wednesday, June 8, 2011

Kidney & Heart

Today Macy had a kidney ultrasound, and it went well.  First off; she did awesome!!!  She just laid there and looked at the lights, and was calm as can be.  We met with her kidney specialist after and she said her kidneys are growing well, no dilation, and they seem to be functioning good.  She said in-spite of Macy's feeding issues she looks good in terms of she doesn't look dehydrated or skinny at all, and she looks pretty proportionate.  Boy, do we work hard in that department; about 80%-90% of my life right now is feeding Macy and getting her to take a nap so I can feed her so it is good to hear that is paying off.  I can't wait for the day that I can sleep more than 2-3 hours in a row a night, and get more than a total of 4-5 hours of sleep altogether at night.  

Macy also had a echocardiagram done.  I am a little worried just because they don't tell you anything when they do it.  They just say they will have a cardiologist look over the images and someone will call in the next few days.  That always freaks me out and I always convince myself that means there is something wrong.  Deep breathe......I just hope and pray her heart is healthy because we definitely don't need 1 more thing to worry about.

Macy originally had her 1st feeding therapy session scheduled for tomorrow after being postponed for 1 month.  They called today saying her appointment is now the 15th???  They said the contracted out therapist taking over for the lady she was supposed to see doesn't do feeding therapy so they are just switching her over to someone else's caseload.........couldn't they have done that a month ago?  I don't think they realize how much this effects kids.  If Macy started when she was supposed to she might not have the need to get a stomach tube put in.

Anywho, 2 more days until Friday!!!  I love weekends and hopefully it's not too hot so we can go to the lake!

Monday, June 6, 2011

Hand Surgeon Appt.

We had an appointment today with Macy's hand surgeon.  It looks like she is going to have her 1st hand surgery around when she turns 1 (in sept.), and the 2nd hand can be about 2 months later.  Her Dr. suggested doing the more severe one first which is her left hand.  She has what we call a "floppy" thumb.  It is technically a category 4 hypoplastic thumb.  Anywho, this means her thumb itself is present; however, she is missing her metacarpal bone (the bone that goes from the base of your thumb to your wrist), and she is missing all the joints, thenar muscles, and tendons.  So her thumb doesn't work and it is only attached to her hand by a little teeny piece of skin.  She has no movement in it and it just flops around.  Because she is missing so many parts, specifically her joints; there is no way her thumb can be reconstructed.  Our only options are to do nothing; but then she wouldn't have a thumb and a huge part of your hand being functional is having a thumb, so.......we are doing option #2.  Index Pollicization sugery.  This is where they take your index finger and move it over and make it into a thumb.  She will still only have a 4 fingered hand but atleast she'll have a functional hand.

Her right hand her thumb is also hypoplastic; but is a category 3.  She is not missing any parts, but it is attached like all the other fingers on the hand so when she bends it it bends down instead of in an opposing direction like a thumb should for pinching and grasp.  Her MP joint is also weak so when she puts pressure on her thumb it just bends the other way.  But she does have movement and some function in this thumb right now.  She has adapted pretty well.  For this surgery she will have to have the web space deepened between the thumb and hand, her thumb will need to be rotated, and she will have to have tendon transfers to strengthen her MP joint.  That thumb will always be weaker than a normal thumb but alteast it will be there and working.

Her hand surgeon and I discussed the possibility of wrist centralization surgery first.  There is no way he will know if she needs this until they are in the OR.  Normally they would do xrays to see but since xrays are dangerous for her to have (since she is so cancer prone) he is going to make the call when they are doing the surgery.

Macy's next appt. is Wed.  We will be meeting with her Nephrologist (kidneys), she will be getting a kidney ultrasound to make sure her kidneys are still functioning and growing correctly, and she is getting an echocardiagram done on her heart to make sure she doesn't have any structural defects.

Friday, June 3, 2011

Mackinaw Vacation Pictures

Getting ready to get on the ferry over to the Island

Fort Mackinac

Mommy, Daddy, Macy & Bela at the welcome center on the Island

Macy on Memorial Day with her Monkey we got in a gift shop

At the Marina on Mackinac Island waiting for Macy to fall asleep so we can feed her

Macy posing for the camera in the camper

Macy & Daddy @ Mill Creek

Macy & Mommy @ Mill Creek
*****We also had one of those Old fashion pictures taken on the Island.  I will see if I can scan it and put it up......Macy looks so cute in it.  She is a little cowgirl!  :)