Sunday, September 8, 2013

Drum Roll Please.......

Hello Everyone!

For those who have been anxiously awaiting an update... here it is!

Review of the last several months (since I haven't blogged since May) for our family..

Maddie is officially a five year old and is in Kindergarten, still adjusting to that.. She says Kindergarten is a lot of hard work but she loves going to school all day long.

Daddy is getting back into more of a routine, he works every second he gets a chance too. We are so blessed to have such an amazing supporter. I am hoping this winter he will get back into a passion of his, duck hunting. He does so much and deserves a break every now and then,.. it's just getting him to take one that is a challenge.

Mommy (me) is...well--- much busier than before. Which is why I haven't blogged/updated as much. I have jumped back into college and am not giving up on my dream of being a social worker. For now I am settling for an associate's degree in sociology and psychology for now. As if that was not enough, I took on the role of the volunteer Volleyball coach at BCA. I have fallen in love with coaching. I have always had a passion for sports and it is such a blessing to have to opportunity to share that passion with children. I love watching them grow and become passionate and confident in something other than video games, their iPad, the internet, etc.

Miss Tonie is as awesome as ever and we love her more and more every day.. it's almost weird when she isn't here, like something is missing :) I don't think she will really every understand how much she means to us, but I know it's impossible for us to wrap our heads around the thought of her not being a part of our every day lives. I thank God every day for bringing her into our lives. She most definitely have Emma BEYOND spoiled! ! When Tonie walks in the front door she has approximately ten seconds (if that) and Emma is squealing because she wants Tonie to hold her. She is absolutely spoiled rotten....and that is quite alright by us! :)

Last but of course not least.......

Emma is weighing in at 20 lbs 5 oz. She is 18 months old and she is 29.5 inches long!!!
Most importantly Emma is THRIVING! :)
While doing so Emma is enjoying life to the best of our abilities. She never has a second of the day that someone isn't there to snuggle her if she wants snuggled. Which can be exhausting :) but someone has to do it! :)
 She is doing great with her Oral Stimulation... still not taking anything by mouth... all feeding and medications go through her G-tube. But she is all about putting things in her mouth and she loves to brush her teeth.
 She is working on two more right now but I think for now we have 8 teeth present :) and she brushes faithfully every day... multiple times a day :)
She does a pretty good job of sitting if only for a few seconds. We are still in the early stages of sitting up but she is getting better :)
 This dog piano is her most favorite toy ever!

Emma is still classified as "non-verbal" for now.
She definitely communicates and expresses herself in more ways than any of us can keep up with! :) Which is a huge blessing... she lets us know when she is mad, sad, happy, EXCITED, and hungry as well as tired.

 Spending plenty of quality time focusing on making as many memories as possible :)
 If these two grow up to have half of the friendship their Mommies have.. Emma will never have to worry about a thing <3 . (Notice how he is holding her leg... I got you Bemma you won't fall on my watch :) ...)
 The bond between her and her "tubies" grow stronger every day! She loves her "tubies" and she needs one in hand a majority of the time. Precious little peanut!
 She loves being able to see herself on the camera... as busy as I have been lately I haven't snuck in as much snuggle time. I love when it is just me and her all day long and all I can do is snuggle with her on the couch. :)
 This is our physical and occupational therapist who work together as a phenomenal team to meet Emma's needs. They have really taken the time to get to know Emma inside and out and they would go to the moon and back for our sweet baby Emma. Thanks for everything you gals do- we love you to pieces. :)
 Working hard but always looking good :)
She loves to hold Miss Tonie's hand... She really doesn't mind car rides. She handles it quite well.. that is about the only time she gets to get outside unless it is a nice day with no bugs and low pollen count = NEVER!
 Well.. I couldn't end without a temper-tantrum...
 I am so proud of both of our girls... Maddie is the perfect big sister and I love that she tells Emma all about God and Heaven and she reads to her all the time. Maddie has grown into such an amazing little girl through this entire experience. I always used to wish I could take away all the pain from this situation but seeing the strength it has instilled in all of us... I understand why God put us through it and I am thankful we have made it through it together thus far..
 Mommy and Emma being silly.. told you she loves seeing herself on the camera :)
 Appointment days wear this poor girl out... Miss Tonie made her this bib in this picture it says : "I know I'm Irresistible but please keep your germs to yourself" :)
Miss Emma is heading off  to bed... her favorite movie, Finding Nemo is playing and she is squealing away at the TV.. the rest of us are heading to bed and we will rise to another blessed day.. God willing.
I am so thankful for all of the blessings in our lives... I promise not to be so long to share updates and pictures next time. More to come.

Wednesday, May 8, 2013

Our Miracle : What Six Months Can Do

 Six of our therapists gathered to share news that will shock you all! Everyone knows Emma has been accomplishing more and more every day but NO ONE expected Emma would reach these levels, let alone reach them in the first six months of therapy! We recently had our six month IFSP Evaluation Meeting where everyone shared their notes from the past six months on Emma's therapy sessions.

Some of our therapists use the Hawaiian Early Learning Profile (HELP) Evaluation.  At 10 months old, these were Emma's evaluation HELP results:

HELP Domains                     Age Equivalent                % of Delay
Self Help                                         3 months                       70%
Social                                             3 months                        70%
Receptive Language                     5 months                         50%
Expressive Language                   4 months                         60 %
Gross Motor                                 4 months                         60%
Fine Motor                                    3 months                        70%
Cognitive                                      5 months                        50%

In a matter of four months,..... these are Emma's results that were recorded at 14 months of age....

HELP Domains                          Age Equivalent                          % of Delay
Self Help                                           9 months                                   36%
Social                                                10 months                                 28%
Receptive Language                         8 months                                   43%
Expressive Language                       7 months                                    50%
Gross Motor                                      9 months                                   36%
Fine Motor                                       9 months                                    36%
Cognitive                                         8 months                                    43%

This is what it looks like when you DO NOT take "NO" for an answer! For all the statistics that were shown to us that our genetically abnormal child would be SEVERELY mentally, physically, and socially delayed..... Check out our 4 month time frame filled with 6 months of developmental milestones!

Nothing is impossible and Emma is proof ... Its hard work and you have to be willing to devote all of your time to the success of your child for many months! The thought that people go by what their physicians tell them. God is the only physician who can determine Emma's outcome in life!

This is what happens when you pave your own path and not let statistics rule your life!

SuperMom is signing out ...That is all! :) :) :)

Tuesday, April 23, 2013

Blessings in Bundles ...... Updates, Updates, Updates!

Next month with mark 6 months in therapy with Early Intervention. Early Intervention provides us with a developmental therapist, vision therapist, and hearing therapist. We also receive physical therapy, occupational therapy, and speech therapy through Macomb Home Health.
 This is an amazing step for Miss Emma... She didn't get into this position herself.. her therapist put her on the ball.. but she is holding her balance and bearing weight on her legs very well... all great signs for her future. :)
                "Oh, hmmmm... I'm not sure how to answer that one... Emerging, maybe?" :)
           "You aren't writing this down are you!?!? You better be writing exactly what I say!" :)
                                  "Oh my, this is soooo stressful! Where's my manager, isn't this
                                            someone else's job...I am a celebrity after all.." :)
                                                              UP ...... AND..... AWAY!! :)

She is shocking every one of her therapists each and every week. Every time we have given her a new goal, although it may take her longer than most, she eventually catches on and is engaging in activities with the therapists. She plays with toys (something we never thought would be possible).
Now that we have the hearing aids and they are working (from what she is showing us).... we are able to increase Speech Therapy and try to get her vocalizing more.

The questions many of her followers/supporters are asking....

1.) Does Emma sit?........ She can sit for approximately two to three minutes and then she gets tired and falls over. The other morning I went in and found her sitting in bed. The best part was when she realized I was taking pictures she threw herself backwards like... "That did not just happen... that was my little secret--- quit taking pictures Mommy!"


2.) Does Emma roll? ...... FINALLLLLLLLLLLY! :) She is rolling... however rolling when you are attached to two tubies.... It's usually ends a little bit like this....

3.) Can she talk ? (Say MaMa or DaDa) Not yet... but anything is possible. She definitely communicates in her own way. She can wave now which is absolutely amazing!!!!

( I have a video of this but it is not letting me upload it from my phone! )

4.) So, how long have you been out of the hospital now? Nearly 5 months! :)
    She has been sick on and off since then but she still has been able to remain home.

Maddie loves teaching Emma new things, the relationship they have is like none other -- that I have ever seen.

                                                       "Sisters don't count chromosomes!"
She is always keeping us on our toes... :)

                                                 Stepping outside with my Daddy! :)

                               I sure am growing up quickly... I am nearly 21 lbs. and almost 28.5" ! :)

"As you can see my Mommy, Daddy, Maddie and Miss Tonie have all been very busy helping me accomplish all these amazing developmental milestones that I have met in the last few months. This has taken constant motivation as well of severe sleep deprivation on their parts. I am a hand full these days, although I may not be stressing them with as many midnight trips in the 'flight-chopter' (as Maddie says) but I am constantly wrapping myself up in my tubies and 'making my box beep' (pulse-ox). Thanks for keeping up with me and always keeping me in your prayers. Maybe God will cross our paths this summer and you can see just how great I am doing in person. May God bless each and every one of you as much as he has blessed me over the last year."
                                                                                                                ---- Baby Emma

Monday, April 15, 2013

Emma Can Hear Us :)

April 12th we headed off to Springfield for what I was sure was going to end in yet another sensory overload nightmare!!! Nop... she is loving them!!!!! :)

They are set conservatively low for now until she gets used to sounds. We will keep you posted on how the hearing process is going but for now here are a few pictures... be sure to keep the prayers coming    . ..... miracles are happening daily at our house!!!!

Thursday, March 7, 2013

Emma's Diagnosis'

Emma McGovern is a one year old little girl with a significant complex medical history which includes chromosomal abnormalities-- chromosome 10p13 terminal deletion and a chromosome 20p13 duplication. Emma has been diagnosed with hypoparathyroidism, hypocalcemia, tracheomalcia, bronchomalcia, laryngomalcia, respiratory failure, nephrocalcinosis, gastroesophageal reflux, Grade III vesicoureteral reflux, immunodeficiency, hypogammaglobulinenemia, a history of bacterial and fungal urinary tract infections, bilateral cataracts, hearing loss and failure to thrive. She is on continuous oxygen and receives her nutrition through a gastrostomy tube.

Emma was born at St. John's Children's Hospital on February 14th 2012. On March 27th 2012, she developed cardiopulmonary failure while at a the Olive Garden in Springfield, Illinois with her mother and maternal grandmother. Cardiopulmonary resuscitation  was initiated and she was transferred to St. John's Children's Hospital where she was admitted and remained until May 3, 2012. On May 1, 2012 she underwent placement of a gastrostomy tube. On August 13, 2012, a port was placed for a more permanent and efficient means of IV access. Emma has been hospitalized nine times in her first year of life.

Emma's caregivers need to be able to provide skilled nursing services such as physical assessment, evaluate her respiratory status, monitor vital signs, address her suctioning needs, and administer oxygen and nebulizer treatments when needed. Emma will need to have her nutritional status assessed, which includes both continuous and bolus gastrostomy feedings and administration of prescribed medications. When Emma's respiratory system is compromised due to illness, the frequency for suctioning and nebulizer treatments are increased.

2013 Brings A Blessed Beginning...

Our family has been very blessed this year. I can't believe we are already almost 8 days into March... where is the time going and I am the only one who feels like time is flying? Although, due to this nasty weather I must say I am very ready for spring and especially summer! I can't wait for Miss Emma to experience the windows open and fresh air... and if her Immunologist allows it --- lots of outdoor time! :)

We added three new amazing therapists to Team Emma in January. Emma was previously receiving therapy at St. John's Pediatric Rehab at St. John's Children's Hospital in Springfield. Due to our financial situation, gas prices made it nearly impossible for us to afford necessary appointments with physicians. With that being said, it was impossible for us to make the weekly trips she needed to be seen at Pedi Rehab... so it was time to transition from our amazing therapists there to a home based agency that provides therapists in our home on a weekly basis. Macomb Home Health met our needs and was somewhat local. (Not much in local to us being out in the country in a rural community--) however, we are very satisfied.

Change is not something Emma handles well,.. therefore I do not handle making her change very well.. but in order to financially meet her needs and medically meet her needs.. we had to make this change. We definitely miss our Miss Ashley (previous occupational therapist at Pedi Rehab)... but she definitely keeps in touch with how Miss Emma is doing. Mary, our new occupational therapist is really great with Emma and has her doing new things every week. Emma receiving therapy on a weekly basis is making a huge difference in her development.

Emma also started physical therapy which was a first for Emma. You would not believe the strides she has made in just six weeks with her amazing physical therapist, Danelle. I am so blessed to have met all of these amazing ladies who love Emma as one of their own and they all feel so blessed to have the opportunity to join Emma on her journey. We also added a Speech Therapist who has been so open to finding Emma's way of communication since we are unsure about exactly what Emma is hearing and what approach we should take.. also with Speech Therapy they focus on oral stimulation and feeding... since Emma is still on a strict "nothing by mouth" order she isn't getting to taste things at this time.. However, Heidi still wants Emma to want to put things in her mouth and want to orally stimulate herself if possible.. Being the amazing therapist that she is Emma is chewing on things and making several different noises... and definitely expressing herself more vocally. Even though it is still just "babble" at this point... it is still a huge blessing to all of us to see her expressing herself.

Mid January we attempted another ABR (hearing test)... of course that was a huge fail because Emma needs to sleep and not move for approximately an hour and a half..... really?!?! I cant even do this... so with that being said unfortunately I am not expecting any accurate results for awhile.

We met with Dr. Johnson on the 18th of January and he informed us that St. John's now has the capability of doing a virtual broncoscopy and he wanted to get one scheduled for Miss Emma.

February was amazing of course,... Emma beat the odds and celebrated her first birthday!!!!!!!!
She also received over 78 cards !!

February consisted of a lot of celebrating and therapy. We have therapy on Mondays and Thursdays. The end of February and beginning of March have been fairly slow... although that is all about to change... Next week, we have therapy on Monday, I have phone conferences on Tuesday and then Wednesday, Thursday and Friday are all spent in Springfield for appointments. Checking in with Dr. Siefert (Emma's nephrologist) on ultrasound results from a couple weeks ago that we had to check on how Emma's nephrocalcinosis is and if there are any changes in her kidneys. Next thursday, we are meeting with Dr. Krah, Emma's ophthamologist to check in on Emma's vision. Then Friday, it is time for the virtual broncoscopy, another attempt at the ABR (hearing test) and last but most importantly to us her IvIg infusion. Then after all that madness, we rest up on the weekend and then turn around and go back on Monday the 18th to talk with Dr. Johnson about the results of the virtual broncoscopy as well as meeting with the nutrition to decide if any changes need to be made to Emma's diet.

Ready for April to be here, hoping in return of all this madness of back to back appointments we can have a few weeks break from multiple appointment trips to Springfield.

Requesting you to join us in prayer... we have recently applied to a different program that what we were originally placed in with our nursing because Emma now having several dianosis' qualifies for the Waiver Program for the Medically- Fragile.... this program will hopefully approve us for more nursing than just the sleeping hours we are getting now. This would mean Kory and I would have time to be a husband and wife. Maddie will have time that she can get our full attention while Emma is being taken care of by a trained professional and I will be able to do all the little things that many people take for granted.... I need to be able to run errands, pharmacy, grocery store, post office, mow the yard, etc. all those things are things that I cannot do right now and Kory always has to leave work early because he has to pick Maddie up from school because I can't leave the house and then if I need anything done he has to make sure that he can get to the places by the close of business. . . this is very stressful for both of us. Maddie definitely is in desperate need for us to give her alone time with both of us. Please be in prayer. The application has been submitted and we know we wont get what they asked for but we know we will get exactly what God knows we need and no more than that. He knows what is in our best interest and God will provide.
May God bless you all as he has continued to bless our amazing family!

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