Tuesday, August 30, 2011

Almost 1!

Well, 2 more weeks and Macy is 1 year's old already!  Wow, that is so crazy to think about.  So much has happened since little Macy girl has honored us with her arrival that Thursday night!  9:45pm to be exact!  Our little princess was 5lb. 9oz. and 18 inches long.  I can't wait to see her in the little Ariel Princess dress I bought her.  She is going to look adorable!

We had a nice weekend up in Ludington, and here are some pictures of Macy at Adam's cousin's wedding, of her on the beach on Lake Michigan, and in the pool with Adam.  FYI:  If you love will love "The Chuck Wagon" pizza up is delicious!

Macy & Adam on Lake Michigan

Lake Michigan Sunset

Macy getting ready in the hotel for an evening swim with Adam

Me and Macy in the pool area

Macy in the pool with Adam under the water behind her holding onto her

Macy only has feeding therapy this week!  (yeah)  I looked at her calendar for September and so far besides weekly feeding therapy she only has 3 appointments scheduled and they are all in the same week (19th).  She gets her stitches out of her hand from her surgery, she has her hematology/oncology appointment for her blood work up she has to get done every 3-4 months to check her blood cell count, platelets, etc.  We decided with her hematologist's approval to put off her bone marrow biopsy for another 6 months or so, and she has her 1 year well child visit.  Hopefully she will be a bit higher than the 1 percentile for weight now that we have had her G tube in for the past 6 weeks.
Picking up Macy from Grandma & Grandpa's house

Happy 5 year wedding anniversary to my wonderful husband Adam!  He is everything I could ever want in a husband and father, and so much more!  Would not have wanted anyone else by my side this past year, and am looking forward to so many more blessed year's with you and our little Macy girl!  Love you both so much!

take care,

Wednesday, August 24, 2011

Macy Kickin it Pool Side!

Macy hanging out by her little kiddie pool!

Macy discovering that the water in the pool is yummy!

Such a cutie pie!

Macy testing the water out before she goes in

Bela laying out in the sun!

Not much going on this week...just hanging out and having fun!

take care,

Tuesday, August 23, 2011

Index Pollicization

Macy had her cast taken off today and her hand looks great!!!  We are very happy with the way it looks; her Dr. did an excellent job!  She still has a splint she has to wear at night and for a little bit during the day for a few more weeks, but we can take it off and let her play for a while each day.  

We were going to just keep it on a few days before taking it off, but Adam took Macy for a walk today when we got home from the Dr.  He looked down in the middle of the walk and Macy had taken the splint off already so we left it off the rest of the day.  Here are some pictures of Macy's new hand, and her playing with some toys.
Macy playing with a can't even tell at this angle that her left hand is missing a finger!

Macy's new hand!  The black stuff is the scabs that still need to heal from the incisions, and some stitches that still need to come out.

Macy playing with her new hand....she was so excited to be able to use it again!
We are done with appointments this week so just fun, and playing the rest of the week!  I am guessing Macy's surgery on her right hand will be in October, maybe November.  That hand will be a completely different surgery because her thumb is functional on that hand, but is weak and not placed correctly on the hand.  Basically, she will need a thumb rotation, and some muscle transfers to strengthen her MP joint.  And maybe deepening of the web space if needed.  Then hopefully we will be done with the hand surgeries and just need to get her eating up to get her off the G tube in the next 6 months.  Definitely heading in the right direction!

take care,

Monday, August 22, 2011

Good Times!

We had a really nice time this weekend...but before I get into that I wanted to mention that Macy never did get her cast off last Thursday.  Her Dr. office called that morning and her Dr. was called into emergency surgery so we had to reschedule.  She is getting it off tomorrow now; and luckily because we accidently got it soaked this weekend.

We went to the lake camping this weekend.  We had a really relaxing time and Macy slept wonderfully!  :)  We did lose power due to some storms on Saturday, but it was turned back on around 9pm.  It's funny because we were just about to go to the dock to pull the boat out of the water around sunset and we heard lots of cheering going on all over the campground.....then everyone's lights turned on all at the same time....YES we have power!  You would have thought someone had just scored the winning touchdown at a home football game or something from all the cheers and screams.  

So after the rain in the late afternoon we did take the boat out.  Since it was so late it wasn't a long ride; but some funny stuff did happen anyways.  It was around 6:30pm and time to feed Macy so we pulled up on the East side of an island to dock out of the sun.  Adam thought the water was only a few feet deep since we were so close to shore so he jumped over the edge of the boat with the anchor in his arms....and down he plummeted to the bottom.  I looked at the depth finder and it said it was 8 feet deep there.  Ooops!  I started yelling out "are you alright?" and he quickly surfaced and said he lost a shoe (he was wearing crocs).  It was pretty funny though.  So we fed Macy, and cruised around for a little bit....she was laughing and smiling the whole way.
Macy out on the boat...she's a little upset because she is hungry in this picture!

Ha ha ha....This picture is hilarious.  Adam setup Macy's little orange seat on the boat seat so we put her in it for a minute and she hated it because it pushed her life jacket up far and squished her face up.  She looks so round and chubby (and stiff from the life jacket) in this cute!  :)
Here are a couple other misc. pictures of camping this weekend!

Macy and mommy hanging out camping

Daddy and Macy hanging out camping

Macy was very interested in the coke bottle...she is pretending to drink silly!

Macy taking a tubby in the camper!  We taped a plastic bag around her cast to keep it dry.   Somehow water got in there and it was soaked.  Luckily she is getting it off tomorrow.  We keep joking that the Dr. is going to take it off and water and noodles are going to fall out now.  Fettuccine noodles from last week when she stuffed them in there at dinner time, and water from this tubby!

We got home from camping this afternoon then met Macy's grandparent's, aunts, uncle, and cousins at Kobe for dinner.  It is a nice Japanese restaurant in town.  They have the big open grill where they make your food in front of you and do tricks, etc.  It was a lot of fun, but when the chef lit the stove on fire (on purpose) and the flame went about 3 feet high it scared Macy and she started crying.  Here is a picture of Macy before the flame, and Macy in Adam's arms after the flame.

Macy before the flame (we brought our own high chair because it is easier sometimes than using restaurant provided one's)

Macy after the flame

Our chef cutting up some steak....yum yum!

He did cut up some small pieces of shrimp and chicken and tossed them to us to see who could catch them in our mouths.  Charlie caught one (macy's uncle), Katelyn tried a couple but they bounced off her chin (macy's cousin), I caught a piece of chicken on the first try!  whoop whoop!  :)  And Adam almost caught some chicken, and when he thought he was done and wasn't looking the chef threw another piece at him and it bounced off his was pretty funny!  So the food was great, and we had a really good time!  I also have leftovers for lunch tomorrow because you get a ton of food!  Good times!

We got home and got some yard work and house work done.  Here is Macy playing on the deck in her exersaucer, and playing with her little laptop.

So that was a nice end to a great weekend!  And now Macy will get her cast off tomorrow (for real this time).  And that is the only appointment she has this week!  I am looking forward to a nice quiet week. 

take care,

Wednesday, August 17, 2011

Cast, blood, noodles, & email

A few things to update on.  First off is Macy gets her cast off tomorrow!!!  Yeah!  We are happy about that.  Keeping it clean has been hard since she is into everything right now.  I am interested to see if those fettuccine noodles will fall out tomorrow or not....hopefully not (we caught Macy stuffing fettuccine alfredo into her cast the other night at dinner).  I think her Dr. said she has a couple stitches that need to come out, and she will probably get a splint or something to wear for a couple weeks.  I am not sure if her thumb will be fully working yet or not; we will see!

I brought Macy in to get her blood drawn yesterday for her complementation group testing.  She screamed her little head off; I felt so bad for her.  They did get it on the first vein they tried, but her blood was coming out soooooo slow that they had to keep moving the needle around in the vein to keep it flowing.  Seemed like it took forever!  Glad that is over.  Her geneticist said it will probably take 3 months to get the results back if she is an A.  If she's not an A (the most common type) it will take longer.

Macy has her feeding therapy tomorrow too.  Too bad her appt.'s were not closer together.  She gets her cast off in the morning and her feeding  therapy isn't until late afternoon....we will have 3.5 hours to kill in between appt.'s.  Not sure if it is worth driving all the way home or not (35 min. drive one way).  
Macy being silly

Macy trying on her "1" year old birthday crown that she will wear with her  princess dress for her birthday party next month!

I wanted to mention an email I read today.  I am part of the Fanconi group to where everyone emails questions, or updates about their loved one's with FA.  This email contained information that was utterly heartbreaking.  As a parent; it is something that I cannot even fathom.  It was from a young woman (late twenties); who has FA.  She was talking about how she has just been diagnosed with oral cancer.  She said she does not want prayers or well wishes; she wants to die.  She actually sounded angry at those that had emailed her privately to wish her well and to offer prayers.  Her life living with FA has been a horrific one.  As a child her mother was ashamed of her and treated her very badly.  She was locked in the house, and could not leave.  She never had any friends; and views herself as being damaged.  It breaks my heart that she feels this way about herself.  I have been so focused on doing everything in my power so that Macy will live as long as possible.  I would give anything for a guarantee that Macy lives into her late twenties.  I never thought there be a possibility that she wouldn't want to.  I know it's a completely different situation.  We love Macy so much; I would never be ashamed of her for having this disease.  She is completely perfect exactly the way she is.  I just want to her live, be healthy, and be happy.  It is just so sad to hear someone say that they are glad to die.  Even though she doesn't want them; I wish her the best, and am sending prayers her way.

p.s. I changed the picture at the top of the blog.  The old one was when Macy was around 7 months old.  She has changed so much so I put a more updated picture on there.

take care,

Friday, August 12, 2011


I am completely ecstatic and happy to say that Macy's appeal was approved!!!!  All of the services requested by Macy's hospital for her genetic/complementation group testing was approved, and it is such a relief!  Whew!  We will be able to get her in early next week to get the samples needed to send off to the lab in Cincinnati.   

This came at the perfect time because I have been going back and forth in my head whether to put Macy through the bone marrow biopsy in September.  They typically don't do them on children until they are 2 or 3 (unless their blood count is abnormal which indicates chronic bone marrow abnormalities...aka: aplastic anemia/pre-leukemia).  However, since we didn't know Macy's complementation group we were thinking of going ahead with it anyways because some groups are prone to bone marrow failure and leukemia much earlier in life.  Now that we have been approved to find out Macy's group (even though it can take 6mo. or more) for the results; I feel a little better about waiting.  The reason I would like to wait is because I don't want to put Macy through another procedure if it is not necessary.  She has been through so much with her surgeries lately (and she has another one in a couple months).  Getting the biopsy is painful; she will need an IV, and will need to be put under anesthesia.  Getting an IV put in in a "normal" kid is difficult; but an FA patient is even worse.  Something about the disease makes it difficult to find a vein; so that results in a lot of digging with the needle in their arm to get one.  She usually ends up with needle digging in both arms, and a foot before they get one.  It is not an easy thing to watch your baby go through.  And she has to go through this every time she gets an IV, or needs blood drawn; which is often unfortunately.  So if we can avoid that we will.  I am wondering if they would be willing to do it when she is under already before her next surgery.  2 birds with 1 stone?  We will see.

Macy gets her cast off in a week!  I am excited.  She has 2 appt.'s next week.  Feeding therapy and getting her cast off along with getting her blood drawn for the group testing.  The following week NO appt.'s!!!!  yeah....we will be camping and we have a wedding!  I love weddings; they are so happy!  Completely happy moments like that are so precious!  I can't believe Adam and I's 5 year wedding anniversary is in a couple weeks.  Time goes so fast!  I wish I could grab onto it and slow it down to a slithering crawl.

take care,

Wednesday, August 10, 2011

Macy did great at feeding therapy today!  She drank water from a straw for the therapist for the first time.  She has been drinking out of a straw at home for about a week now, but for some reason a lot of times what she does at home she doesn't do at feeding therapy.....makes me look like a liar, little stinker!  :)  She ate her bananas pretty good too!  She is up to a stage 2 puree a day.  We even tried fruit and oatmeal puree which is a lot thicker yesterday and she ate it pretty good.  Macy is tolerating her tube feeds a bit better now that we started the AR (added rice starch) formula.  She is not puking much at all anymore, and is sleeping well at night.  Let's hope that continues.

We did get a call from the GI specialist office the other day that her liver ultrasound looked good!  No tumors so that is good news.

Macy is scheduled to get her cast off on Aug. 18th.  She may be getting a splint or something after that for a few weeks, but atleast we will be able to see her hand.  I have been able to see her new thumb moving with her other fingers now and again which is exciting to see.

I have been going back and forth in my mind in whether to book a trip to Orlando or not in the next month or two.  We were going to go to Sea World, and Universal (I haven't been to either in about 20 years) but after looking at their website it looks like there would be a lot we wouldn't be able to do with a baby.  So then we were thinking maybe we should just go to Disney.  We know that place like the back of our hands so we would know where to spend our time so Macy can enjoy it too; but if we went we would only be able to go for 3 days, and I am not sure if it is worth flying all the way down there for 3 days.  We will see.  I figure when we go to her appt. in Minnesota in October we can spend a day at Mall of America.  Maybe that will have to be enough for now.

We should be hearing about appeal #2 soon from our insurance company.  Their 15 cal. days ends this Friday.  I should just call, but I am afraid of what I will find out.  Oh well, I just gotta suck it up and do it.

take care,
Macy showing how wide she can open (unless there is food coming towards her...then only little bites!)

Macy chewing on her elephant's foot

Friday, August 5, 2011

Surgery Pictures

Our last day with floppy thumb!  Macy is playing with her sippy cup at dinner in this picture.

Mommy and Macy laughing and playing, and saying goodbye to floppy thumb!

Macy in the waiting room at the hospital playing with the keys on my purse!  We love her little pink camo PJ's!

We had to be at the hospital at 5:30am so we were all tired; even Macy!  She fell asleep in her daddy's arms. You can see the purple "X" on her left arm that they had me put on as protocol to make sure they do surgery on the correct hand.

 Family picture before Macy was taken into surgery....they took her around 8:00am!  She did wake up as the Anesthesiologist was carrying her down the hall to preop.  It was so sad seeing him walk away with her, and knowing that floppy thumb would be going back.  We were so nervous.

Macy still asleep after her surgery.  We got to see her in recovery around 2:00pm.  Her IV is in her right hand so that arm is splinted; and her full arm cast is on the left.  Poor baby!  :(

Me holding her in the recovery room after she woke up.  She is not happy!

Macy back to her happy self at home!  She is hanging out on her new bean bag that her Grandma Stewart got her, and wearing her new shirt (to fit over her cast) that her Grandma Thornton got her!  You can see how much the cast slid down.  The top was up to her shoulder and her finger tips were ticking out the bottom initially.

Yesterday we went back to the Dr. and he put on a new hot pink cast!  It seems to be fitting, and working much better than the other one.  Let's hope it stays on for a couple more weeks until it is time to get it off.  Her little fingers and new thumb stick out the end.  I even saw her move her little thumby today!

Macy has been very interested in her hands and fingers since her surgery.  She pays a lot of attention to each finger and how they move, pinch, and look.  She also grabs small things and tries to put them in her casted hand.  She was concentrating so hard today on trying to grab something with that hand that when I spoke to her it startled her so much she literally jumped and threw the toy.  It was funny!

We had a HUGE breakthrough the other day with drinking.  Macy can officially drink out of a straw now!  She does great at it, and will be able to get so many more liquids by mouth now.  I haven't tried giving her anything but water so far because I don't want to ruin it and turn her off from the straw.  All it takes is one bad experience and it will be like starting over again.  So we will stick to water for now.  But, that is one more step towards getting her G tube out.  Now i just have to figure out how to get her to like milk.

Macy also had a liver ultrasound yesterday.  It was after she got her new cast on so she screamed her head off.  But, we made it through it, and hopefully she won't have to have anymore for a while.  I am not sure if it is because she had another surgery recently or what; but is seems like Macy is vomiting up almost all of her feedings during the day now.  Her GI specialist wanted us to try the AR formula (added rice starch) so we started that yesterday and it seems to be helping.  She has been sleeping pretty good at night, but the AR formula has been clogging her feeding machine at night so the alarm has been going off ALL the time.  I did some research and it looks like it clumps easily so I bought a mixing pitcher and hopefully we can make it without clumps.

Well, a couple more weeks and we should be able to see Macy's new hand.  I can't wait to see the look on her face when she realizes she can pick something up easily without having to scissor with two lateral fingers.

take care,