Monday, December 26, 2011

Merry Christmas!

Hoping your Christmas was Merry and Bright!

Ours sure was!

We got to travel to my parents house this year to celebrate Jesus' birthday!  We had a great time, enjoying my parents brand new house, and we tried not to mess it up too badly! 


Santa came!

Sister Hugs!

Thrilled with her doggy!

Father/Son bonding time, but it was COLD outside!!

Thankful for our newest gift, and enjoyed every moment of celebrating her first Christmas HOME!!!

Ella Grace is having ear tube's put in and adnoids removed this Wednesday.  Praying all goes smoothly!


Tuesday, December 20, 2011

Medical Update!

It's been a BUSY few weeks for Ella Grace.  We were assigned a new pediatrician, now that the kids are on state insurance.  I have to admit, that I was rather skeptical and worried, since I couldn't even pronounce her name, as to what we were getting ourselves into with Ella Grace.  Our record hasn't been too great, in finding doctors who are equipped to deal with the medical needs of children with DS.  Well, God knew what HE was doing, and we were assigned to an AMAZING doctor.  She got the ball rolling on every kind of doctor that we needed to get in with, and we have had more appointments in the past 6 weeks, than we have had since she came home!  I can't even begin to tell you how grateful we are to our new doctor, Dr. S.

First, Dr. S., ran some minor blood tests that STILL had not been done by previous doctors.  Through these tests, we discovered that Ella Grace has tested positive for milk and egg allergies, as well as positive for Celiac Disease.  Dr. S. immediatley set us up with a pediactric Gastro doctor, who is going to do a scope on Ella Grace in Januray, to determine if Celiac is indeed positive.  He feels like her numbers are high enough that there is no doubt in his mind, but the only true way to find out a diagnosis, is to do the scope.  He brought in his dietician to talk with me about changes in her diet, and took away the overwhelming feelings of what on earth we would be able to feed this child!  The dietician also put Ella Grace on NeoCate, a dietary supplement that we add to her rice milk.  She has tolerated it well, and now we will begin receiving it from a Home Health agency, who will deliver it to our home.  He then sent her on to an allergy specialist.  This past Friday, she went through Allergy testing, and this doctor wants to challenge her milk and egg allergy, since her skin didn't react to the tests.  So, we are now re-introducing milk into her diet, and will later re-introduce egg.  We feel like, so far, she is doing okay, but she is still drinking Rice milk (since we had already bought the Costco case).   She has a patch of ezcema (spelling?) behind her ear that gets really bad when she is reacting to foods.  I'm noticing that it is coming back, since milk has been added back in, but we are watching it closely for now. 


(Trying to escape from Dr. T's office (Gastro Dr.)

Another specialist that Ella Grace has been to, is the ENT doctor.  Back in May, Ella Grace had a hearing test and failed with mild/moderate hearing loss.  At that time, no referral was made, and no mention of sending her to an ENT was made.  Dr. S. scheduled her for a repeat hearing test, which Ella Grace took in early December, and failed again.  The ENT has set her up for ear tubes and adnoid removal, all to be done on December 28th.  We will see if the tubes will improve her hearing, and we are praying that it makes a difference for her.  Speech will come once she's able to hear better, and we are so excited to see if this helps!  She is already trying to say so much, so if this helps at all, I really feel like her speech will take off!!!

Ella Grace was also referred to her second cardiologist appointment.  Dr. O. saw her in May, and wanted to see her one more time in 6 months, so early December, we went, and he CLEARED her!  He wants to see her on a yearly basis, but he's very happy with the surgery repair that was done in China, and feels like her heart is very healthy! 
 
Appropriate shirt for her Cardiologist appointment, don't you think?  :o)


Lastly, Ella Grace has finally been set up with all the necessary therapies that she needs.  She starts OT Occupational Therapy) tomorrow morning, where we are going to start working on CHEWING!!!  I'm so excited to overcome this hurdle!  She starts PT (Physical Therapy) in two weeks, and we are on the waiting list to start Speech, so hopefully that will fall into place, soon!  She also goes tomorrow for her pre-op appointment, for her tubes surgery.  They won't do outpatient until she has been cleared by the anesthesiologist, because of her heart surgery.  If he won't clear her, she will have to do the surgery in patient, but we are just going to do what's best for Ella Grace.  Whatever they deem safe, will make us happy!  She also has to have pre-op bloodwork tomorrow, which really WON'T make her happy, but hopefully it will be quick, with no digging in her little arms, like last time (both arms).  But this is at the Childrens hospital, so hopefully they will know better what they are doing!

It's been overwhelming the past two months, to add in all of these appointments, along with working, and life with 3 other kids to keep up with, but each appointment, we have been blessed with doctors who have shown alot of compassion and kindness.  Our foot is finally in the right door, and we are making progress, quite quickly!  Please pray for smooth and easy procedures these next couple of weeks.  It makes me nervous, having to put her under.  I don't think I have ever been comfortable with it, but when your child has had heart surgery, it really just makes me a nervous wreck to think much about it! 

And just to leave you with a little speech progress from Ella Grace, here she is signing/saying "Applesauce".  It's her favorite sign right now, and you better believe, every time she signs it, she gets what she wants!  :o)
video

Thursday, December 8, 2011

The Christmas Photo Shoot, Round 1

This is my sweet girl, admiring the pretty, shiny Christmas ball that Mommy placed in her hands to try to get her to sit still for a photo shoot.......

This is the look on her face, after she threw the pretty, shiny Christmas ball on the floor and watched it shatter..... (not Mommy's brightest idea!)

and this is the beautiful girl, who has so much spunk and giggles, who won't sit still for photo shoots, and who brings so much JOY to this household of 6!

Thanks to her Auntie M for helping with today's photo shoot!  We were worn out, but had lots of fun!  And for more fun, here are a few out-takes!  Hope it makes you smile!





Wednesday, December 7, 2011

Truth in the Tinsel

I found a really neat way to talk about the TRUE meaning of Christmas this year, and I just wanted to share a little bit about it!  It's called the "Truth in the Tinsel", and it's been really fun to read a small part of the Christmas story each night at dinner, and then handmake the different ornaments with Allyson and Ella Grace (when she sits still long enough, ha!).  We got started a couple of days late, and spent the weekend catching up.  I really wanted to be intentional this year with making sure that the kids really experience the true story of Christmas, the birth of Jesus, and all that lead up to his birth.  Even though it's geared towards younger children, the boys are listening and involved in the discussion each night.  They aren't into making the crafts, but they do come and look to see what we made each night.  It's not too late to get started if you want to participate, but I just wanted to share this fun, very inexpensive tool!  And, of course, I will add a couple of pictures from our first day!



By the end, we will have a tree that reflects the story of Jesus birth, and I can't wait to see it come together!  I will post pictures at the end to show you the final product!  Merry Christmas, and may we each take the time to remember what this season is really about!

Monday, November 28, 2011

Thankful

It's been too long since I've updated this blog!  Life has been busy at a steady pace, and this Momma has gone back to work, although part-time, it has drained me beyond anything I ever dreamed... balancing it all has been quite an adjustment, and I'm honest when I say, that I don't know how full-time workin' Mommy's do it!!!  I have so much respect for all that they are able to hold together!  I feel like I am failing at this  (you should see my house), but the Lord has so very graciously given me the perfect job for the hours that I needed (when both girls are at school) and I'm so thankful for his provision for our family.  I have been working at the Pre-School at the girls school... there are two classes, and I am not in Ella's class, but I get to see her all the time!  Can't ask for much better than that!  I should find out tomorrow if this is going to be a permanent thing, or if it's over (we are waiting district approval for my position).  Either way, I'm SOOO very grateful for the opportunity to work these past 2 months!  God continues to shower his blessing on us, and this has definitely been one of those blessings!

Brad has been working in a warehouse, where they ship items that have been ordered through Amazn.com, so if you are looking for Kitchen Utensils... order from Amazn, and it may have been shipped by my hubby!  :)  We are so very grateful for this job for him as well.  It's not at all what we had planned for our lives, to be in the place that we are, but we are seeing God's hand in our lives in ways we never have before.  How can we complain when He continues to remind us that He is here, and He knows the plans He has for us.  We have been attending a church, and it seems like the sermons have been hand-picked for the situation we are in, and the encouragement we continue to receive from that has been such a blessing to us. 

In this season of waiting, we are blessed.  We don't handle it all with grace, every single day.  It's a constant battle, and we have to continue to choose to be grateful for where we are.  There are SO many in this world who are hurting and living through MUCH harder circumstances than we are, and I pray that we can find ways to minister to others through this.

I just wanted to share how grateful we are to have each other, to have four WONDERFUL children, and to be surrounded by our family.  We can't wait to see what God holds for us, but in the wait time, we are choosing to be Thankful!

Wednesday, October 19, 2011

Buddy Walk 2011

It's been a couple of weeks ago, but we got to participate in our first Buddy Walk with Ella Grace!


Team Ella Grace

It was great to see many families that we have met before, and to see SO many people out there supporting their family members and friends.  We were blessed to have my sister's family come be a part of our team, and we had several friends/family members who donated to the fundraiser in honor of Ella Grace. As you can see, it was cold and rainy, but it didn't stop the crowd from moving forward! 

We got to hear a little bit about this couple, who have been married for more than 5 years!  They met in grade school, and I couldn't help but feel so proud to hear their story!


We tried for a group shot!  Lots of little one's, which means lots of families to connect with!

We all took turns pushing our Buddy around the 1 mile trail!


And we let her finish the "walk", well, by walking!!

Coming across the finish line with Daddy!


We are very proud of our little Buddy, and are so blessed to be a part of this community here!  We look forward to many more years of being a part of the Buddy Walk!


Next year, I'm guessing she will be ready to walk the whole mile!
So proud of this girl!!!

Saturday, October 8, 2011

She's got a new smile!

Notice the beautiful smile, with a mouth full of baby teeth!

And now, here is her new smile, as of October 7th, 2011......


minus a bottom baby tooth, replaced by the big tooth that is already growing in!  Still beautiful, if you ask me!

Thursday, September 29, 2011

Let not forget Ella Grace's turn.....

I totally have fallen off the Blog band wagon.... I failed to mention that Ella Grace started back to school last week!  She was so excited to finally have her turn, and she gets Limo service to and from school, so it's even MORE exciting for her!  It's party time when that giant yellow bus shows up to our house each morning!  It was hard to put her on there the first day, but she absolutely LOVES being on the bus, and it's all little tiny pre-schoolers who are on her bus, so I know she's fine!  She even has her own car seat to sit in, and seeing all the faces of her little friends each morning brings such joy.... so many little sweethearts on that bus!

Doesn't this face say it all?


I'm not gonna lie.... I showed up at the school to see her get off the bus, and I was relieved to see there were lots of crazy excited parents just like myself, who wanted to see that our kids arrived safely at school!  I even got to stay the whole morning, as they wanted an extra set of hands to help with the first day!   I loved being there and getting to see how the routine works.  She has 7 kids in her class, with 2 teachers, and even with my help, it was exhausting being there for 3 hours!  It's a very action packed, busy 3 hours spent!


WALKING with her classmates this year!  It's such a proud feeling to see her walking, and not having to be carried, like last year... have I mentioned lately how VERY proud of this girl we are? 

She loved music time!


And to end her day, as they were walking in their line to head back to the bus, she fell, which caused the little girl behind her in line to fall right on top of  her, and Ella Grace's face hit the floor.  I'm so glad I was there, she cut her lip pretty badly, and she cried HARD... poor thing.  I got her all cleaned up (blood was running down her chin) and we came on home.  Despite the rough ending to her day, she had lots of fun and has been excited to go back every day!

Friday, September 2, 2011

Kindergarten

Well, we DID it!!!  We actually let her go this morning..... ha!



She was SOOO excited and ready to go! 

New back pack that she got from Granny and Grandpa for her birthday!

 We are so very proud of her, she steps into new situations with confidence and excitement!

Her very sweet teacher!

And the best part, her Auntie M works at her school, and I think she checked on her about 12 times in 3 hours this morning!  ha!  I'm so thankful to know that she's there with her!

And off she went......and YES, I cried... kind of alot, but it's okay!  She never knew it and I'm much better now, at least until Tuesday when she has to go back!



I love that these two posts Jr. High and Kindergarten are back to back, and I LOVE that we get to start school all over again!  Many think we are crazy for having such a large split in age, but I love it and wouldn't have it any other way.... besides that, we have two boys who are 1 year apart in school.... college is going to be killer! 

Thursday, September 1, 2011

Jr. High

Just sent these couple of crazies off to Jr. High TOGETHER!!!

One with excitement over the NEW, and one who's "been there, done that" on the whole Jr. High thing, and is not terribly excited to be returning!  :o)

Jacob, 6th Grade

Caleb, 7th Grade

Great, great kids, and we are so very proud of them!  Praying that the excitement sticks for Jacob... he's NEVER been excited for school before, but he hugged me so tight before bed last night and said "Mom, I'm SOOO excited!  I know it's going to wear off in a couple of days, but I'm excited!"  Caleb screamed/yelled in mock agony, but I think he kind of meant it... lol! 



There are so many mixed emotions for this Momma today.... sad to see my baby boys growing up SO fast, but so excited for what is to come!

Off they go.....

(tomorrow, a certain girl in this house is headed to Kindergarten, so come back for some more cuteness!)

Thursday, August 25, 2011

FIVE.....


Amidst all the chaos in this household, a certain girl in this family turned FIVE last week!


I'm not gonna lie.... I've been in some serious denial about this birthday!  I've been telling her for months that we are counting her years backwards from now on, and she was turning three this year.  She loved to taunt me that she indeed was turning FIVE!  She wouldn't play along with my game, and I'm a little bitter!  Love this girl to pieces, and I know that with being FIVE, comes another forbidden subject in this house..... kindergarten.

This girl is beyond ready to head off to school every day.  I know what this means, though, cause I remember when two certain boys in this house started kindergarten, and it feels like yesterday.  From this year on, time will fly, and I know how fast it's going to fly!  She couldn't be more excited, though, and I will try to hold it together and be excited with her! 








 Ally girl, you are loved beyond comprehension!  We are priveledged to call you our sweet daughter.  You've taken on a big roll this year, the roll of being the BIG sister in this house, and you have come through it all beautifully!  Ella Grace thinks you are the best thing in the whole wide world!  She follows your every move, and I'm so thankful that you roll with it, and don't get bothered by that!  So very proud of you big girl, and I guess it's okay for you to be FIVE now!