A whole new world

The end of January we were at our Pediatrician's office for a well-child check-up for Austin and Zack.  While there the Pediatrician didn't like how Hannah was moving her extremities (she felt like she was posturing) so she said she wanted us to go to a neurologist to make sure she didn't have CP.  I immediately went home and was able to get us an appointment for the following Tuesday which was amazing considering they were booked out until May.

At out appointment with the neurologist she agreed that Hannah had low tone and seemed to be doing some posturing, but otherwise she didn't know what that meant.  So she ordered a bunch of genetic tests to be run and said we would just go from there and every 6 weeks or so we would send a whole other slew of tests until something came back or until we got tired of doing them.  I didn't think much of it; I felt like if she had something it was probably minor or we could fix it, but most likely we would just never find anything and she would catch up and be "normal" within the year.

Because she had some questionable hearing tests we went and had a sedated hearing test done on February 14th and while there we sent all of the labs the neurologist had ordered.  We found out that day that Hannah has moderate hearing loss that they believe is temporary caused by fluid in her middle ear.  We went and saw an ENT a couple of weeks later and scheduled surgery for tubes to be placed.

She is a horrible IV poke!  We never get away with less than 5 pokes.  Because they had to send all of the labs for genetic testing it didn't help.  Today took 5 pokes, the IV team felt bad so they made her a bow over one of the wraps.

This is during the ABR (sedated hearing test).

The hearing test is over.  We were just waiting for Sleeping Beauty to wake up.

On March 4th we went and had the tubes placed.  The surgery went great and we were in and out of there in about 2 1/2 hours.  The ENT said she had really thick mucous stuff in her middle ear so he is very hopeful the tubes will drain it and her hearing will improve. 

Right before they took her back to put the tubes in her ears.

About an hour after getting home I got a call from her neurologist.  I heard about the first 10 words out of her mouth and that is all I remember of our 10 minute conversation.  Our world dropped out from underneath us. 

We found out that Hannah has 1q44 deletion syndrome.  It is extremely rare and there is hardly any information on it. Some of the current things she has that are part of the syndrome are:

• global developmental delay
• butterfly vertebrae
• small hands and feet
• microcephaly (she's starting to develop this)
• small stature
• feeding issues
• hearing loss caused by middle ear fluid (ear glue)
• eczema
• cyanotic hands and feet
• "slap" patches and mottled skin
• happy and easygoing

Some of the things that she could develop that we are hoping she never does:

• seizure disorder
• nonverbal
• intellectual disability
• ability to eat, crawl, be potty trained
• breathing problems

That is just a small amount of information that we have been able to figure out in the 6 days we have known about it.   We won't be able to meet with a geneticist until July, but I don't know that he will be able to give us much more information.  We have found a Facebook group with deletions similar to Hannah's, but it's so rare that it's a bunch of genetic disorders grouped together.  The group has been great for support and just learning general information, but it has been hard because I don't want to belong to them.

She has been in early intervention since November and has been receiving physical and occupational therapy since January so we will just continue on with those because that's about all we can do.  We fall more in love with this little girl everyday and have great hope that she will be happy and as normal as she can be, but at this point only time will tell.

Who couldn't love that face?

Advent Activities

The last 2 years from December 1st through the 24th we have done an advent calendar.  It gets exhausting trying to do something every day with the kids.  I love doing stuff with them, but especially when I'm working it makes it hard so we try to do easier things on those days.  I didn't get pictures of most of the stuff that we did, but here are some of them. 

We drew pictures for their lists to send to Santa Claus.  Austin's is a remote control helicopter, Zack's is a remote control car, and Gavin just scribbled, but then said later that he wanted a scary monster. 

 Austin- remote control car, Zack- roller skates, and a pogo stick, Gavin- scribbles.

 Lucky for us Santa had a mailbox right by our house so we went and mailed them.  They were so excited about this!

 Hannah wanted proof that she was with us.

 The next activity I stretched out over 3 days.  The first day we made the sugar cookie dough.  The second day we cut them out and baked them and the third day we frosted them.  The boys love cooking with me and most of the time I love it too.

 Zack's in the middle in the striped shirt.

 Austin and Zack's kindergarten class put on a little Christmas program for us.  They just sang some Christmas songs.  It was really cute and they loved doing it.  

A few of the other things we did were:  making countdown chains, making cards for all of the grandparents, shopping dates with mommy to buy Christmas presents, getting a new movie, getting a new book, drinking hot chocolate, making treats, and looking at Christmas lights

Snow Filled Weekend

We woke up to around 12-14 inches of snow on Saturday.  The boys were so excited!  I got their snow gear all on and sent them out to play and then layed Hannah down for a nap thinking I would have some quiet time.  After only 30 minutes the boys were all whining and wanted to come in so I decided I would have to be a good mom and go out with them since Aaron was at work.

They wanted to sled, but the little hill wasn't working so I told them to try going down the stairs.  We had enough snow that it actually worked pretty good.  Austin is in the orange coat and Zack is in the blue.

 Gavin was in a mood yesterday and his boots were a bit small which did not help matters!

 It was up to their knees if not higher.

After sledding we decided to build a snowman.  Austin and Zack named him Black Tooth.  I had a lot of fun spending the morning with my boys.

Then we came in and had some hot chocolate and they all got to put in as many marshmallows as they wanted to.

When Aaron got home from work we had movie night and watched Madagascar 3.  It was a fun day!

On Sunday when we woke up there was probably an additional 4 inches of snow on the ground.  Aaron woke up with the flu in the middle of the night and the kids were acting a bit sick plus because of some other reasons I decided to stay home from church.  I was really bummed that Aaron was sick because I kept thinking it would be the perfect day to go sledding.  Then I finally realized that I could just take them myself so as soon as Hannah went down for her nap me and the boys headed out. 

Gavin was in a mood again.  All he wanted to do was run down the hill or eat snow and whine, whine, whine.  I didn't get any pictures of him sledding because pretty much every time he went down I just put him on a sled and pushed him down.  Yeah, I'm a good mom like that.

We had lots of fun and finished off our sledding with a snow ball fight.  I'm so grateful for moments like these!

My baby is 6 months!

I can't believe Hannah is already 6 months!  She is such a blessing to our family!  She is the sweetest, most content baby I've ever seen.  It is rare when she cries and so when she does I have a really hard time not holding her, even when it's night and she's supposed to be sleeping. 
She is still behind on her development and her Pediatrician is talking about doing an MRI if things don't get better.  We are all really hoping that she's behind because she's so content and not because there is something wrong!
On September 17th she had an assisted roll over from her belly to her back for the first time.  If I get her half way there she can do it.  On October 22nd she rolled over twice from her belly to her back all by herself, but she hasn't done it again since then.
She got her first tooth (it's her bottom left front one) on November 6th.  It's awfully cute, but since she's been a biter while nursing from the day she was born I'm not loving it!

She loves her brothers and they LOVE her!  She gets no breathing room when they're around and they fight every day over who gets to hold her first.
She has really bad eczema so her Pediatrician had me go off dairy and we are trying a new lotion.  Good for her, but bad for me it seems to be working so far.  I miss chocolate!
She is just barely starting to fit in to newborn shoes.  I can't believe how little her feet and hands are. 
Her hair stands at least a good 4 inches off her head now.
I get stopped every single time she leaves the house by people who can't get over how cute she is and I have to agree!
We started feeding her baby food.  Her first food was applesauce.  To say that she dislikes eating food would be an understatement!  She never opens her mouth for a single bite and just clamps her little lips together as tight as she possible can.  It is so frustrating!  We have to pry her mouth open just to get food in there and then she just pushes it all out with her tongue or gags on it.  If it wasn't for the fact that I felt like I got chastised at her last appointment for not feeding her very much I would have probably quit trying.

 

She found her tongue a couple of weeks ago and she is hilarious to watch.  She will stick it out and then just sit there and play with it and stroke it like she's petting a dog.  If Aaron touches her lips she will stick her tongue out like she wants him to play with it.  She is such a funny girl.

She also loves to play with her hands.  She will intertwine her fingers or make a perfect U (which makes Aaron very proud) and just sit there and watch her fingers.  

I love her more than I would think is possible!

I decided to try putting her in the jumparoo to see if she would like it, but she couldn't reach the floor so her dad put some blankets underneath to help.
I don't know why we got so lucky to have this sweet, beautiful, amazing girl, but I will forever be grateful that she's mine!  We love you Hannah banana!
6 month stats:
Length:    24 1/2 in.    15%
Weight:    14 lbs. 12.5 oz.    25%
Head Circ.    41.4 cm.    20%
Petite and Perfect!

Crazy Hair Day and My Red Heads

 Zack and Austin got to do crazy hair day at school.  They thought it was so funny that they looked like porcupines.  I loved seeing all of the other crazy hair do's when I dropped them off at school.

I layed Hannah by Gavin and I thought it was so sweet how he put his arm around her.  He doesn't smother her like Zack and Austin do, but he sure loves her!  He will randomly go up and talk to her or play with her and there is a really cute bond I can see between them.  I love that they are both sucking their thumbs in this picture as well.

Sibling Love

The kids were watching cartoons one morning in our bed. (H, A, G, and Z)

The novelty of Hannah has not worn off!  These boys can never get enough of her and frankly neither can me and Aaron!  (Austin and Hannah)

A lot of the time when they are sitting on the couch they are all smashed together as close as can be which I think is so cute; at least until all of the fighting begins. (A, Z, and G)

Ancient History Museum aka Dinosaur Museum

I try to take the boys to The Dinosaur Museum every year during $2 Tuesdays because they love it and it's at least more affordable then.  This is the first time I have taken all of the kids by myself and I must say that I questioned my thought processes while doing it.

As I pulled up I saw that the line came out of the building and wrapped around not just one side of the building, but two!  At that point I considered turning around and driving back home, but I didn't, instead I just parked a mile away.  I hurried and fed Hannah and then as we were walking up to the building I couldn't figure out why the stroller was so hard to push and looked down and one of my tires was flat.  We got up there and waited in line and finally paid to get in and then proceeded to lose Austin.  Luckily, I noticed within probably 30 seconds and saw him 30 feet away from me crying.  By this point I was chanting to myself, "We are going to have fun, we are going to have fun."

 

 

We were having a good time and then Gavin decided to throw one of his tantrums where he just sits on the ground and won't move.  It doesn't matter if I walk away or not he will just increase the volume of his screaming rather than getting up and moving.  So he got to be strapped in to the stroller after that and didn't get to get out.

Then Zack decided he wanted to play on one of the computers there which I might have let him, but they were all being used and I wasn't going to stand in line for those so he decided to pout and be grumpy because of that.

 It was at this point that I wondered why I try to do fun things with my kids!  Gavin still crying and mad because he's strapped in and there is Zack on the end pulling a stupid face because he's mad at me. 

The wooly mammoth was the thing that Austin and Zack were the most excited to see.

 Playing in the sand was the other thing they were the most excited to do.  Overall, I think the kids had a great time.  As for me I think I need a little more time so the frustration of the day is more funny that frustrating!

Hannah 3-4 Month Pictures

We were supposed to get family pictures done on this day, but I had a bit of a hair color mishap so I cancelled them and just decided to get some 3-4 month ones done of Hannah.  I LOVE this outfit, but Aaron hates it so it was probably better that our whole family pictures weren't based around it anyway because they were originally going to be.  I made her little headband to go with it.  I love this beautiful little girl!

 

 She ended up doing a couple with the boys which I wasn't prepared for, but I still think this one is cute and really shows Gavin's twerpy personality.

 I LOVE this picture as well!

2 Months

Hannah had her 2 month check-up a day before she was 9 weeks old.  She finally started smiling when she was around 8- 8 1/2 weeks old.  I was starting to get really worried that she was Autistic or that something was wrong.  In conclusion to this line of thought I have realized that I'm a spaz! 

She is a good baby and is very loved!  When she was around 5-6 weeks and was waking up around 3 times a night I was going crazy feeling like a zombie.  I was talking to some other moms and they gave me the great advice to make sure she was eating every 3 hours during the day even if she was napping.  It felt extremely wrong to wake her up, but after I started doing that she started sleeping longer and longer through the night.  By her check-up she was sleeping 7-8 hours a night which her pediatrician was very impressed with.  She said that is very good for a breast fed baby.

Her brothers still can't get enough of her and I'm pretty sure I tell them at least 30 times a day to give her some space.  Although it is helpful when I'm trying to make dinner to have them hold her because it keeps her happy for a bit.  That girl loves to be held!

She has very dry skin!  We slather her with lotion 2-3 times a day and I swear it makes no difference.

Other notes about her check-up-  We were very relieved that her pediatrician could no longer hear the heart murmur.  However, she was still concerned about the length of her limbs and as she was feeling her head she noticed that her head came to a bit of a point in the back.  It was hard to see because of all of her hair, you really had to push her hair down to notice.  Because of that and her worry about her limb length she decided to have us just go get x-rays of her head.  A couple of hours after the x-rays the pediatrician called us to let us know that the x-ray showed that she had craniosynostosis.  You could say that we were slightly upset!  I cried the rest of the day.  I could hardly even let myself think of her head being cut open because it made me so ill so instead I focused on the fact that they were going to shave off her beautiful, long, red hair and I shed a lot of tears over that.  The next day our pediatrician had us go get a CT scan of her head because the craniofacial surgeon wanted one done before we met with him.  The next morning I got a call from our pediatrician to let us know that the scan showed that everything was fine.  She said that the suture that goes along the back of her head wasn't closed and it normally is so as her head was growing it bulged out a little bit there.  Even though it isn't normal for it to be open it isn't necessarily abnormal so it wasn't anything we needed to worry about.  So after a lot of tears, prayers, and worries everything was okay again and nobody will be shaving that beautiful red hair! 

Her stats:
Length-  21 1/4 in.     15%
Weight-  10 lbs. 15.5 oz.  50%
Head circ.-  37.5 cm.    20%

 

 

These are 3 separate photo sessions trying to get her to smile.  She does not give up smiles easily!  Most of the time she just has a really content look on her face instead of a smile.  I love how in the middle picture she shows us how bored she is with our efforts.

We all love this little girl so much!  I can't believe how lucky I am to have her!