Friday, February 29, 2008

Fun at the Zoo

I took Mylee to the zoo yesterday and meet up with our friends Kim, Reese and Jack (twins)! We had a wonderful time. Kim and I are going to try to meet at the zoo at least once a week until it starts getting really warm.

We are still very busy almost everyday of the week. Thank goodness today is Friday, that means no appointments on the weekend and daddy gets to stay home and play. We had physical, occupation and speech therapies today. Mylee is doing great, however she continues to be very off balanced and has fallen quite a bit this week and she doesn't seem to recognize when she bonks her head or pinches her fingers in drawers. Mylee's occupational therapist, Miss Tara has recommended some sensory therapies we can do at home. We will start joint compressions tonight.

We also had an appointment with Dr. R (neurosurgeon). Dave and I were concerned she may have an infection on her incision. No infection, however a few of the sutures have abscessed. We will continue to put warm compressions on the area so we do not continue to get infected. He will want us to follow up with him in about 3 weeks if it does not start to improve. Dr. R will also schedule an MRI for Mylee to make sure everything looks good, this MRI will also include her lower spine. We think this will take place in about 3-4 weeks. If everything looks good we will follow up with Dr. R in about 6 months. Keep your fingers crossed for us!

Overall, the week seems to have been pretty successful. I will call next week to follow up with Mylee's pulmonologist to find out if her modified barrium swallow study test has been scheduled. Miss Nicole (Speech therapist) is anxious to start working on some oral feeds.

We have a low key weekend ahead for us. Papa Spray and "Uncle" Dave will be heading home to Colorado on Saturday afternoon. We have had a fun week with them. Mylee will see them again soon though when we travel to Colorado for Easter.

Signing out for now - Chow!

Saturday, February 23, 2008

"I did it"

Another week has passed us by (post decompression)! Mylee is sure a trooper.... she has a doctor appointment almost everyday. This week we completed two more therapy sessions with her occupational, physical and speech therapist. Mylee is getting better at wanting to swing again. She seems to be getting more and more comfortable around the therapist and able to show them what she can really do! Miss Tara, her occupational therapist thinks she heard Mylee say "I did it"! (twice)! And I think I heard Mylee say it once this morning. We have been working on putting objects "in" different larger objects, such as blocks "in" a bucket. This is teaching Mylee her strength and how little strength it takes to toss such objects. Once Mylee completes these tasks we praise her accomplishments and usually tell her "yeah, you did it". My little angel is sooooo smart!

We have a busy weekend ahead of us. Our good friends Andy and Heidi will be joining as one and we will celebrate with them as they take their vows this evening at their wedding. Mylee will be wearing a very special dress Nana Pat and Papa Chris bought for her before she was born. I am very excited to dress Mylee in it this evening. I am hoping it will not be too cold, we will bring blankets and a warm jacket. The celebration will take place at the Botanical Gardens in Phoenix.

Tomorrow, Papa from Colorado will be coming back out to see Mylee and of course golf. This trip will mainly focus on relaxation and lots of golfing with his good friend Dave Cain. It is suppose to be really nice this weekend, lots of sunshine and clear skies. I am hoping Dave and I are able to take Mylee for a couple of walks to the park. Maybe we can work Mylee onto the swing at the park without any meltdowns. We will keep practicing none the less.

We hope everyone is well! Lots of love to all of you!!

Tuesday, February 19, 2008

A New Language...

Our mornings have become quite routine. Dave gets ready for work, pours his cup of coffee for the road and feeds the dogs. The "Today Show" tuned in and I pour myself that wonderful "cup of Joe". And Mylee starts to stir around 7:30am.

I love watching my daughter play first thing in the morning, she is so animated and full of life! Mylee's expressions on her face say it all. Mylee isn't quite forming words yet, but we see some progress even since her surgery. Mylee is saying "Da Da DAAA, da da da da, Da DA da DaAaA" and each time she says this repetition a different sound is heard for each "da". And lots of hand gestures, Mylee is being taught some sign language at therapy. Mylee loves her therapist, Miss Nicole! I think we will see new sounds be formed within the next few months. We continue to practice all words.

We have a busy week ahead of us. Mylee was at all three therapies yesterday. We have somewhat of a break today. Tomorrow we start her stomach emptying tests at Children Hospital (this is a two day procedure, we will continue and finish up on Friday). And Thursday, we meet with the Social Security office and home assessement with AZeip (home therapy sessions).

We will try to fit in some playtime at the park this week and maybe visit the zoo on Friday. I will post new updates later this week.


Thursday, February 14, 2008

Happy Valentine's Day

It has been a great week with Mylee. We have been to all three therapies and continue to work on our fine motor skills and building strength in Mylee's core in order to make her stronger. We hope to be walking by summer!

Mylee has started to get back to a routine, taking a nap in the morning and late afternoon. Today we watched Sesame Street, Mylee and Elmo learned about "jumping". Mylee practiced her jumping and thought this was really funny. I love being able to stay home with her while she recovers. She is truely a blessing to Dave and I.

I hope everyone has a loving day! Please remember to: Live life to its fullest, Love more, and laugh more often!


Monday, February 11, 2008

Mylee's Surgery experience

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Our little princess has taught Dave and I so many wonderful things. She is truely our saving GRACE, very fitting since we named her Mylee Grace! These pictures from the hospital tell her story. What a trooper!

A New Day, A New Month, A New Year!

We thought 2007 was a tough year. Mylee's first year a life was challenging as we struggled with illness after illness. The latter part of the year, we were successful with staying out of the hospital - however, Mylee was diagnosed with Chiari type I Malformation. Dave and I were able to schedule appointments with Neurosurgeons in both Arizona and Colorado.

January, 2008 -

Mylee was hopsitalized with what was believed to be another aspiration pnuemonia. A modified barioum swallow test on January 4th, confirmed Mylee was aspirating solids. On Monday, January 7th, we were admitted to St. Joseph's hospital in Arizona. Mylee underwent a Nissen Fundoplication and a G tube placed on January 14th. Mylee also underwent a decompression of her brain on January 17th.

We are home and looking forward to all of her achievements in 2008. Stay tuned as I will hopefully provide everything we hope to overcome and accomplishments she makes throughout this year.

Thank you to everyone for all the thoughts and prayers! We love you all!!

Chiari Malformation

Chiari I Malformation

Definition: Chiari I Malformation (CMI) is one of several identified malformations of the hindbrain, which consists of the cerebellum, pons, and medulla oblongata. Additionally, the back part of the skull (posterior fossa) is too small, and the cerebellar tonsils (part of the cerebellum) are pushed downward through the hole at the base of the skull (the foramen magnum). Chiari I malformation is TYPICALLY defined as a 3 to 5mm or even higher herniation of the cerebellar tonsils below the foramen magnum. However, there have been a significant number of diagnosed cases with no herniation. The result can include compression of the brain stem, the part of the brain which controls involuntary body responses such as the heart beating and breathing; compression of the cranial nerves; and disruption of the flow of cerebrospinal fluid.