Cincinnati update

Today we received some important mail from Cincinnati....it's our information about Hunter's visit in March. Just seeing this large envelope brought mixed emotions for me. It's weird how just an envelope can do that. It had our itinerary of events and appointments for Hunter. It's a full 4 days for us.

First we'll be having an anesthesia consult, the next day we'll meet with a Gastroenterology specialist (other than reflux, hunter doesn't have any major GI issues but it's part of the process). After that we see, Pulmonary doctors, and then an overall Aerodigestive Center clinic to meet with more doctors. Following that, he'll have a broncoscopy under anesthesia so the doctors can look at his airway and see what it looks like now. He will be admitted for observation overnight. Lastly, he will see his ENT doctors on Thursday.

Wow, that drains me just typing all of that..my emotions are everywhere from happy to sad, to nervous, anxious,  scared..you name it.

I can say that I am very confident Hunter will get the best care in the world for his airway. Cincinnati is the best of the best. I still feel we are making the right choice going there for Hunter. So that makes me feel better just knowing that. I can't imagine all the emotions I am going to feel once we are there.

I hate to think that it will still be many hospital stays and possibly multiple surgeries to fix his airway. I would swap places with Hunter in a second if I could...

Keep my sweet Hunter boy in your thoughts and prayers if you wouldn't mind, please..

gingerbread house!

We decorated a gingerbread house over the weekend. Jeremy started off with doing all the pretty "shingles" on the roof with precise perfection...then I started and he was not impressed with my not-so-much- artistic abilities...We then let Hunter do his part by throwing the candies on the snow covered "grass" on the front. Most of the candy ended up in the dogs mouths...they were happy puppies needless to say. 

sorry the picture is fuzzy

How to drink from a bottle, Hunter style

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Hunter update

Well I did it. I scheduled Hunter's doctor appointments at Cincinnati Children's Hospital. We are going the end of March. He will be seeing several doctors and specialists and they will determine their game plan on Hunters airway.

I am feeling so many emotions right now, happy, scared, nervous, anxious, you name it..I hate knowing Hunter has to go through all these tests and procedures, but I will try to remember there is a good reason behind it all.

Once I know more about our schedule and trip I will update more on this then. In the mean time, Hunter has been doing great. Hasn't gotten sick(knock on wood)in a long time. He has been getting the synagis shot still which seems to be working as it should, keeping those nasty viruses away!




He was waaay into his cartoons this morning according to dad..

Hunter and his buddies at their play date today

Mickey Mouse Clubhouse....obsessed are we???? lol

As soon as the show came on, all three of them swarmed the t.v. like teenage girls at a Justin Bieber concert...I don't know what it is but kids sure love this show. Hot dog hot dog, hot diggity dog.....

say a little prayer, please

One of the mom's in my mommy group has a friend who's 10 month old baby boy is suffering from a life threatening brain tumor. His name is Evan Wolfe and he has a very rare type of tumor that is called pineoblastoma. His parents are asking for prayers for their sweet little boy for a miracle to happen, because unfortunately, the odds are against him. 


This story really touched me deeply..I look at this sweet little boy and I see my Hunter..they have the same beautiful blue eyes...


Evan, stay strong little man. There are many many people praying for you and thinking about you. 

His story can be found on this website HERE

Evan Wolfe

Santa Claus is coming to town....

Hunter waited patiently in line to see Santa Claus...he did so well! I was a little nervous on how he would act but he was awesome! Such a sweet and handsome little man he is...

And finally...Hunter's turn.....

And a video from the day as well...

And finally..these are the pics that the little "Elf" working for Santa took...

Of course when we wanted to him do his adorable things he does all day long, he wouldn't for the camera! Why are kids always like this???? He dances and then "gets low" to the ground but he stopped doing it after I pulled out my camera!!

T minus 2 mins

Waiting patiently for the madness to begin...


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Happy Thanksgiving!!!

Good food, family and watching Christmas movies...and now resting up for some shopping later tonight!

But most importantly I am so thankful for my sweet Hunter...and hearing his voice more and more thanks to his speech valve.

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bath time fun

of course he would not look at the camera at all!!

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Gimme some money....

Jeremy and I were curious to know how much moolah hunter has in his piggy bank...we knew it had to be a good amount since there always seems to be money going in there....



There was over 65 dollars in there!! We got lazy and didnt want to count all the pennies so it was a bit more than that but wow!!!....can I borrow some money hunter???? Just kidding little man...I swear we put it all back!!


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hunter babbling away!

I put on Hunter's speech valve today....well I should say this, even before I did that today, he was making a lot more noises than the usual squeak here and there he makes out of his trach. I'm hoping this means his airway is getting bigger all on his own. I can't help but get excited about hearing more and more of him! So anyways, once I put on the speech valve, he just babbled away...love this!! (it's kind of long but I just couldn't shorten it as it's too cute ; )

where does the time go??

My plan was to do monthly updates on Hunter...as you can see I failed terribly....but I am going to try today at least. Hey, better than nothing right???

In two weeks you will be 15 months old! What??? Wow, time has been flying by...a little too fast it seems. I look back over the past year and can't believe how far you have come little man. You weighed in at 22 lbs today at your Dr. appt (to get his first dose of Synagis). Although it may be a tad less since you did have your clothes on.  You are a TODDLER now. You keep me on my toes, you just keep getting better and better. Okay, sometimes, harder and harder...but I can't handle that ; )

Hunter uses sign language and can sign: more, car, book, please, bubbles, ball, hungry, water...I think that's all of 'em for now. He knows where his tummy is and he tries to point to his nose...still working on that...He is really smart (yep, I am one of the moms who thinks their baby is the smartest...hehe). He copies my moves if I am waving or dancing etc. He listens to commands( I know, he's not a dog) but he LOVES getting the dogs treats. He know exactly where to get the doggie treats if you say "let's feed the dogs".

Sometimes, I think he's going into the "terrible two's" a little soon, he can throw a tantrum with the best of 'em! He knows what he wants and if you don't want him doing something he'll use his amazing "baby strength" to take you down! I'm not kidding, this kid is strong!

He really is a sweet little guy though, he loves giving kisses, and dances to Elmo on Sesame Street and still makes me so thankful everyday that I have him in my life. He is truly a precious little being.

Love you little man....

Hunter doing his favorite sign "more"

shopping with hunter

Today we did some shopping at the mall. J needed some work clothes and Hunter loves clothes shopping....or should I say mommy loves clothes shopping for Hunter...yes it's a bad habit but how can you resist the adorable stuff for babies?? Surprisingly though, I only got 1 item for him and it only cost 4 bucks so I did good today ; )

don't worry PETA....it's faux!

just hanging around in the potted plants at the food court..

flirting with the Old Navy mannequins

so tempting to buy him this hat...but he has a very similar raccoon one for this year already...

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updates

This week I got word from Hunter's doctor that he was approved for a RSV antibody shot called Synagis. It helps protect him against this virus since he is more susceptible to illnesses because of his trach. I am very happy it was approved since this is a very expensive shot and of course insurance companies don't like to pay for expensive things like this! Unfortunately, it's a shot that he has to get once a months through Flu season... : (   Sorry little man...but it's better you get a little poke than get really sick! I take him to his doctor's on Tuesday for his first round. After that a home health nurse will come to our house to administer it.

On another note, I finally got the ball rolling with getting in touch with the doctors out in Cincinnati for a second opinion. As I have mentioned before, they are the "best of the best" when it comes to kids airway issues. I talked to the doctors assistant who took a lot of Hunter's info and she said that one of the nurses will be calling us next to get some more info from us. Sounds like they are scheduling out quite a ways, which is actually good since we don't plan on traveling until early next year, March or even April. I really think it's the right decision for us, yes, it would be much easier travel wise if we could go to Denver or Phoenix(and they are great hospitals) but I feel that if it's at all possible to go to the best, then we need to make that happen. Even if it will be quite a challenge as there will be multiple trips to Cincinnati.

Hunter is such a good helper...he loves giving the doggies treats...

For Halloween this year we went to a retirement home with my mommy group. It was so fun for us and the residents to see the kiddos dressed up and they handed out candy and some of the residents were even dressed up..very cute! Hunter is usually the sweetest, happiest baby....nope, not today though. He wanted nothing to do with walking down the halls "trick or treating"...he was full blown tantrum throwing all over the place..it took both me and my mom to handle him as we switched hands and swapped who pushed the stroller to give each other a little break...wow, where did my little darling baby go??? Let's hope this attitude is not here to stay!

Of course once we left the building, Hunter was as happy as could be...he just LOVES being outside and walking all over...never on the side walk though, he always wants to be on the ROCKS next to the side walk...oh well, whatever makes you happy little man. He just wanted to do his own thing. Minus the whole terrible he's-not-even-close-to-two-yet-two's, he sure looked adorable in his little dragon costume...

Later in the day, we got home and got ready for the trick or treaters...we had plenty of candy to pass out...we ended up with only about 10 trick or treaters total! So now we are left with way too much candy, now next year when I don't buy much candy..we'll get loads of kids..I just know it...

birthday weekend

I had a great birthday this year...Saturday night Jeremy and I went on the Trolley of Terror in Old Town...very fun and a bit spooky too (for me at least ; )  It took us around old haunted spots in ABQ. Very fun, thanks Mom for the tickets for that!!

Sunday was a nice lazy day with a nice Starbucks surprise in the am for J and I from my mom...then some shopping and a day of watching movies and snacking on a pumpkin pizza and carving pumpkins! Thanks for all the birthday wishes everyone!

silly boy

This boy is so easily entertained...

Happy Birthday Jeremy!

Today is Jeremy's birthday. We had a nice low key day with a yummy dinner and cheesecake for dessert. Happy birthday Jeremy!! Hunter and I love you very much!


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chasing hunter

Hunter has a speech valve now which allows the air to go up through his vocal cords to make sound, instead of just exhaling through the trach. Since having the trach we haven't been able to hear his voice, so this has been so fun to finally hear him! It's still not his full voice and it's not all the time because the air still has to go around the trach tube which doesn't leave a lot of space for the air to go around but it's a fun preview of what's in store for when the trach tube comes out! It melts my heart to Hunter giggle...

things we DON'T put in the garbage....

Hunter's favorite book right now is his "baby sign" language book. Glamma BS got it for him for his 1st birthday..what a great present it's turned out to be..it's Hunter's favorite book. Of course in this video you would think otherwise. Glamma thinks he is just putting his book in the library book return bin ; )...I'll go with that too.

I've been meaning to write an update on Hunter lately but I guess I have been procrastinating. I know he has a trach but when I write about it and really think about it it kind of makes me a bit anxious.

We have not "loved" Hunter's ENT Dr. here in NM very much. She has no communication skills..and I'm not being picky, she really has none! His last appt with her in Aug. we had to pry information out of her. I am aware that until they look down his airway again it's hard to say what's going to happen and when etc etc. but at least say SOMETHING! We have decided we are going elsewhere for his care for his trach. Denver would be nice because of the proximity, however, Cincinnati is the best of the best when it comes to children's airway disorders. It's going to be expensive and I'm not sure how we'll even do it but we'll make it happen, even if it takes several trips (which it will). We know he is going to need a big surgery and potentially more than one even. I look forward to it and life with no trach but it terrifies me to have my sweet boy have surgery again. I wish I could swap places with him. I'm not sure we want to travel east in the winter months so we are thinking closer to spring that we will go to Cincinnati, but we are not for sure.

My next step is contacting the Dr.'s there and letting them know Hunter's background etc. They schedule kids out a few months I have been told since kid's from all over the world to there for their amazing work. So I am going to be working on an email that I will send to the Dr. there. I have been told they are great about getting back to emails. I will also be calling them. I have been wanting to do this for the past month but something about getting this ball rolling is making me nervous! I will be updating after I have contacted Cincinnati so stay tuned.

On another note...Hunter is learning so much lately..He is seriously like a little sponge soaking up every little bit of knowledge he can! He is doing great with his signing, he is so smart! I love him!! We even got to hear his voice a tiny bit as now he's been wearing a speech valve which allows the air he breathes out to go up through his vocal cords instead of his trach! It brings me to tears almost hearing my little man.

my little mr. fix it

I almost forgot...Hunter on the tractor..so cute!

a day at the pumpkin patch!

Today we went to the local pumpkin patch, it was a fun time..Hunter really enjoyed it...this was just a local one down the street from our house...we may still go to a bigger one later this month. However, for being a small pumpkin patch done by volunteers it was really nicely done..they even had a small petting zoo and duck races, and a corn maze...so fun!