Little updates....are better than NO updates...I suppose...right??!!

• We finally got the forth IV in at about 1:45 am .....Thank you NICU nurses...Thank You GOD!!!
  
• Avery was up on and on during the night
• Very spacey/lethargic ALL morning
• Not really very interactive today as he has been the last couple of days
  
• WE tried the coughilator(sp?) with respiratory therapy this morning---a machine that helps produce a good cough ;to help him get those secretions up with out LOTS of suctioning,not sure yet if think it will be effective for him
• Respiratory wise....doing allot retracting/pulling(basically struggling)working hard at breathing.....Repository rate has been more consistently higher today
• Sounds more junky today,and had chest PT and suctioning....and still sounds yucky
• Labs that were drawn during the course of trying to place an IV yesterday/today at 2:00 am....showed that one of his levels(CO2) was really low,but could be caused from one of his medications(but this is really low for him)
• We will be starting a new medication to offset that low level and also get more lab values tomorrow
• A Team meeting was supposed(still may ;not sure)to happen tomorrow;but now it is thought to wait on some of these tests to come back,before meeting....I also hope that when ever this meeting happens it will include ALL the important team players....
  
• Working to aggressively increase feeds today,even though he will probably not respond well to this,the reasoning behind it; is that he needs to be at least up to full volume prior to the test tomorrow,or they may reschedule it for the end of the week and that will set everything else back...UGH....
• We have switched temporarily to a blow by o2(it looks like a big shovel mask and is not necessarily attached to his face it sits on his chest ) ,also due to this test coming up tomorrow,they would rather not have the nasal cannula(o2 nostril tubing)
  
• We are waiting to go down for a test.....hopefully it will give helpful information
  
• I am waiting to see if Avery's neurologistt gets back to me today or SOON.....
• Avery's coloring is very pale today.....hummmm....not real sure why,but I have mentioned these changes ...for documentation Purposes OF COURSE....
• Surgery came in this morning ,but I was not particularly coherent AT 5:00 AM AFTER BEING UP UNTIL 2:30 AM...So I imagine they will be back later...although it's not like they have anything to say to me,because we are waiting for Avery's test to be done along with the results....

ON some side notes:

I will be doing school work with the kids here at the hospital in the evenings and YES they have things they will be doing STILL at home during the day;although ONE on ONE teaching is needed in some areas ....since we are not sure of the length of this stay,I need to do this ...so prayers that we can accomplish what needs to be accomplished would be great!!!

"Wherever God's finger points,HIS hand will clear the way" .....
a quote from my daily devotional

Just a real brief update.....

• We went up on Avery's feeds a little this afternoon;but I realized a couple hours later that for some ODD reason the feeding wasn't attached to Avery...DAH
• He is NOT handling the increase very well....but WE need to continue to work on this
• Some pretty high respiration's throughout the day and some hard work with his breathing
• Surgery came by and we discussed one of the tests they want done prior to moving forward with surgery plans
  
• Avery lost his third IV today....and he needs access, his antibiotic is in IV form & he needs to be kept hydrated since his feedings are not giving him nearly enough at this time
• Avery's seizures are not great today....some tonic/clonic
• He has been really spacey and kinda out of it this evening
  

Please pray for access tonight....

Please pray for ALL the CCS family's on OUR floor...it's pretty busy here at the "Fall Resort"


"The Lord your God is with you he is mighty to save"Zeph 3:17

Is comforted that I know God is in control.....praying for wisdom and guidance about what he would have us do!!

After being home about ONE month from our stay at the Summer "Resort"...
We are a little sad to report that we are now residing once again ....at the "Fall Resort"
We we had our Epilepsy visit over a week ago & we increased Avery's Depakote.....he seemed pretty sedated and had pretty crazy vitals...with respiration's consistently in the 50-60(which is high for him)...and has also had some wacky heart rates, from 60's @ times to as high as 160's at times.....both on the very low and very high ends.....his temp however had been rather low for him....

We were not real sure what may have been causing these irregularity's...

As the week went on so did Avery's sedation and respiratory rate....

We decided not to increase his seizure meds again ;as per the schedule to increase,due to the sedation we had been observing ....in fact;Avery's seizures had increased and we actually gave emergency medication the beginning of this week.

Avery continued to show signs of discomfort;weather it is from the pain he experiences with his feeding/medications----or just general neropathic pain. He had been putting out large volumes of green bile,which in my mind is an indication that he is having some motility issues....(things are not moving along and emptying properly from his gut/stomach).

His PH levels have been low.....acid in the stomach;which means when he reflexes it probably is very uncomfortable!

Since he has been sedated his interaction with others has not been great;it takes a little more effort to get ANY response from him....When he is in the mood he responds well & still really enjoys music!!
Some of Avery's favorites still are his siblings and those close to him:)

Avery continues to have trouble sleeping/resting very well.....he has never been able to be on any kind of schedule no matter how hard we work for that....Between his seizures,reflux,pain,meds...ect..ect....this is a goal we hope at some point to achieve.

We were suppose to see Pulmonary last week; but due to other issues that came up we were not able to go....and I was waiting for another appointment (Neurology)that was canceled to be rescheduled before I rescheduled our Pulmonary appointment(.....UHG...did you get all that PHEW)...Anyway...
I was encouraged by one of my home nurses(Thank you) to have Avery seen by Pulmonary sooner; rather than later....so needless to say we(Devynn, Amy-OUR- nurse and I ) brought Avery in Thursday 9/24...to be seen and evaluated by the Pulmonary.....regarding his most recent change in respiratory status...mainly his increased RR rate!

My hope in bringing in Avery was to have them access him and tell us if we should continue with ALL the breathing treatments we have been administering.I had also wanted to know what their thoughts were regarding why HIS respiratory status has drastically changed most recently.Guidelines about the usage of the O2.....along with many other concerns & thoughts were ALL things that I just thought would be addressed with possibly a new treatment plan in mind...ect...ect....

"I know the plans...I have for you say's the LORD "

I am comforted by that above verse....God knows the plan's he has for Avery....and ALL Avery's family.... although that brings me comfort; it doesn't always prepare me for the words spoken to me below....

I really didn't expect the doctor to come in and say ...."I really think Avery NEEDS to be admitted "....

So after approximately 15 hours(9 1/2 in the ER) of being at the hospital for what was a routine visit.....We finally made it up to OUR home away from home floor 9east the CCS floor....

Something I used to always say was "Expect the unexpected through and by Christ"
I had a wonderful experience a few years back....
It was with Andrew...we never expected that he would be able to stay at the over night Christian camp in NH.... seriously ....I never in a Million years thought it would happen.....I had a close friend of mine remind me one day; that Andrew is in God's hands;and that he would be okay...So picked up my chin....and said alright....I guess we'll see what happens...
It was mid week and I was on one of my morning walks around the lake ;having a conversation with God(something I Loved to do)...and I ALL of a sudden realized....Andrew stayed overnight at camp ...a few nights...Andrew whom I NEVER would have expected to stay anywhere (For many many reasons)...stayed at camp overnight....and on top of it ....he was doing better than okay ..he was doing Great:) It was at that very moment that I knew to ALWAYS"Expect the Unexpected through and BY Christ" ....YES I know this above experience about Andrew is far different fr0m the one about Avery...
BUT....you know what in the way God thinks ...it really isn't.....

Avery is in GOD'S Hands ...We may not expect things in our lives;What God expects is for us to rely on HIM.Avery will be okay;just like Andrew was(and is)...it just may not be the kind of okay we would expect....So ....I just have to sit back and "Expect the Unexpected"......

"Trust in the LORD with ALL your heart and lean not on your own understanding ;in all your ways acknowledge him""

I can pray for certain things about my child or children ....but what God wants is for us to FULLY rely on HIM and know that; whatever is in HIS WILL ...we can expect HIM to guide us and bring us through, if we lean on HIS understanding....

Since being admitted on Thursday several things have happened....

• Avery has had 3 IV'S placed...the last one being about 12:30 this AM.....
• Avery's feeds had stopped Thursday night......and he has been receiving IV fluids
• Avery is being treated for Aspiration Phenomena(again)
• Avery's seizure medications are once again being adjusted(actually back to what they were prior to the last increase)...no emergency medication has not been needed,and we hope to keep it that way!
  
• Avery's feeds have restarted yesterday(Saturday)...which is causing him extreme discomfort along with reflux;we have not increased his pain meds ;as of yet,but have been giving Tylenol
  
• Avery had some bright red blood in his G-tube last night.....I would be merely speculating if I comments on what I think it means...so I'll wait and hear what the DR says!
• Avery's o2 had been turned up slightly
  
• Avery needed back to back nebulizer treatments on Friday
  
• Avery's respiration's continue to be on the high side,in regards to his respiratory rate and his breathing, he is having more moments of comfort than when we came in on Thursday
• Yesterday Avery did not seem as sedated as he had been
• Avery has been very irritable
  

The Plan....

• Surgery team is being consulted about a few possible in the very near future surgeries; and what may need to be considered in the more distant future for surgery.
  
• Having a test to measure the amount of reflux,should help ALL of us with some of the decisions that need to be made
• Keeping Avery from further Aspirations is A BIG part of the continuous discussions we are having,and team meeting...with ALL the teams to discuss a plan in moving forward
• Working his feeds up this week,while discussing the next steps is part of the plan
• Continue with breathing treatments and chest PT to help with his comfort
  

Prayers for OUR family would be appreciated......

"I know the plans...I have for you Say's the LORD "

Some side notes.....
AVERY is 15 months old today and officially a Toddler...WOW!!

OUR friends The Hilliard's remain inpatient;and are dealing with many things...your continued prayers for them are also appreciated....

It is comforting to have Jessica(Eithene's mom) here to chat with,vent with, pray with.....
http://www.fromthebanksofjordan.blogspot.com/

God gets you through...even on limited sleep!!

He is OUR strength when we are weak:)


We went into "The resort " on Tuesday,(and I was going on like 1 hour of sleep)... when we arrived we were greeted with ..."Are you guys back again"..."ohhh what floor are you on".....to..." what are you doing here"...to...." WOW Avery looks great"...to...." I'm glad to see you here, as a visitor of course"...you get the idea...lots of familiar faces lots of nice comments...we miss OUR extended family at the resort...BUT SORRY we are NOT looking to go back for a stay anytime soon...NO THANK YOU!!

I was sad we didn't get to visit with our family friends ...The Hilliard's....they are still there, and their daughter has a central line infection...SO PLEASE pray for her...she receives her nutrition through this line and she has very limited line access....to read more about her and her story>>>>>

http://www.fromthebanksofjordan.blogspot.com/

Anyway...It was great to see many familiar faces ...but you know there's an issue when you know more people at the hospital than you don't know,or I should say they know you!!

We meet with the PACT team on Tuesday....and things went well;we are glad to have the support of a team such as theirs:)

Their kind way about them and how they spoke,made me comfortable with things I have been thinking about...in terms of long term things to consider:)....

PACT will come with me(us) on some up coming appointment's, if I request for their presence!

I don't think it's a coincidence.... that after meeting with the PACT team...The tone of our epilepsy Doctor seemed very different!
And I don't believe in Coincidences...it would be GODincidences:)

What I mean by that is....he was MUCH more ATTENTIVE than his usual self;
I also wonder if me writing clearly on the information paper I received prior to seeing the doctor and stating on that information form under chief concerns ...I WROTE "COMMUNICATION as one of my TOP concerns...which obviously leads to decisions/discussions about Avery's care regarding his neurological status and how it is affected by his Epilepsy and how to proceed with the course of treatment for his seizures!

Avery performed great for his EEG....to bad it was prematurely ...YEP..he had a nice cluster ....but unfortunately it was not recorded because it was while the tech was hooking him up....ohh well...such as life....it is what it is!

At this time our moving forward plan is to increase Avery's Depakote medication;and slowly decrease one of his other seizure meds.....He will have more labs next week, and we will be corresponding with the epilepsy team as often as needed!

I'm still processing OUR appointments/and the information.....but all in all it was a pretty productive day:)

Unfortunately ....We only made it to MY local appointment on Wed; for a couple of different reasons...they will be rescheduled ...One of my nurses was sick Wed, and I am so Thankful for the help from my awesome kids as we trucked to my appointment and did errands....more and more I see the blessings God has given me in my children!

We have 2-3 appointment's next week to meet with other some of Avery's other team of doctors!!

While I'm thinking of it....I want to mention how much we love and appreciate ALL OUR 4 HOME nurses(OK Avery's nurses)....We are so blessed to have each of you in our lives:)

I am appreciative of ALL your prayers/words of support/ encouragement for our recent appointments and up coming ones ....they truly help:)

1 Timothy 1:12- I thank Christ Jesus our Lord, who has given me strength, that he considered me faithful, appointing me to his service.

It is now after 3:00Am...we have got to stop meeting like this(ha ha)...so...that's all for now!
Love & Blessings to you ALL!

PS...I am apologizing now for whatever spelling errors I have made!

Latest Happenings

Another day in the life of ...US!!!

Sorry I haven't been very good at my updates lately....this is an area in which I am having trouble balancing.

With the school year beginning and so much always going on ...I feel like I barely have time to go to the ladies room! Let alone get on the computer and give detailed updates.....

This past month has had its ups and downs.....

We have had some appointments, which have included Ophthalmology (vision ) GI (a couple visits) Interventional Radiology (IR---G/J tube change), CCS (Coordinated Care Services) and LABS more than enough times, and many more appointments to come...just today and tomorrow...EEG, Epilepsy, Pulmonary, PACT team ...
Neurology which was scheduled for Wed has been rescheduled (due to the DR being out of the country) ... next week we have another GI appointment, along with Cerebral Palsy clinic (CP clinic) next month and who knows what else is on my calendar...

Ophthalmology (vision )----this visit was LONG......we arrived early (as we ALWAYS do)...to HURRY up and wait.....the long and short of this visit was that Avery's vision is pretty much the same, not really better , but NO worse (which is great).....although on his good days we can say we really have seen many improvements, his eyes don't always seem so STUCK in the left position ...and YES...for those of you who are wondering ...he is still considered legally blind....We continue to work with him visually and have a great therapist to help us continue to help Avery USE what vision he has...

On another home school front note....Not only does Avery's vision therapist work with him she also has been so kind as to start to teach my kids (especially Devynn) Braille....I am so amazed each day with Devynn and her ability to grasp so quickly & learn things... she is amazing ...I am so proud of her...Lucie has let her borrow a Perkin's Brailler...almost like an old typewriter, but for Braille...it is so cool and Devynn loves it...she is hungry to learn new and different things and this is such a gift to me to be able to watch her learn and grow...I am also thrilled that Tyler has allowed Devynn to teach him how to use the Brailler & he too, has shown an interest....God is so good..ALL the time!!! Thank you Lucie....for your kindness and all the ways you have given support to our family. :)

God had really prepared us....although one may not have thought so....Our kids had taken ASL (American Sign Language) the last couple of years, even though Avery's hearing appears to be fine, we had been exposed to a better understanding of a person that has not only a hearing impairment, but vision impairments...who would have thought...?? Well God obviously did....

GI---Stomach, feeds, G/J tube....weight-- growth...ect ect....Avery has been having lime green bile come out of his stomach into his venting bag on and off since a couple of hospital admissions ago, but we have seen more of it lately...We are still not real sure of its cause.... it seems as though that it is due to his motility issues!

We have increased one of his medications that address that very issue.

His feeds have been the same and are in need of increasing the calories this week, but I will see how his days go and determine when is the appropriate time to adjust his G-tube feeds, it probably WON'T HAPPEN in the next few days anyway...due to other changes likely happening....like seizure med increases!

I noticed a couple weeks ago that there was pink STUFF in his venting bag...and KNEW it was his Depakote (seizure medication )which was an indication to me that he was losing some of that much needed med...We had labs done and found that his med level had in fact dropped some...

We started to put the Depakote in his J-tube....which has been very difficult for Avery to handle, this med needs to be mixed with water and the tube needs to be flushed with warm water before and after administration, because the J-tube can clog so easily and seizure meds tend to be very sticky...so.... the long and the short of this is....he gets this medication over about a 15-20 minute period of time...We have increased his Nerontin (Medication for Neuropathic pain) along with just recently, we decreased the amount of fluids we were instructed to use to administer this medication ...and he seems to be a little better. We also have to keep the feeds off for a period of time while administering the med and after, as he can't handle ALL that fluid intake...

Anyway since giving the med in his J-tube his Depakote levels went up slightly ...not much, but a few points...So I guess it was good that I suggested that we go this route for the time being anyway!

Avery---had developed an infection in his G/J tube area and then had allot of granulation tissue around that area....he seemed very sensitive, when we would do dressing changes or clean the area ....over the last few days, we have been applying a medication, that seems to be helping. He also had some blood in his venting bag the other day, but we have not seen it since....He had his tube changed on Friday......

Avery's weight/growth...Avery is ...DRUM ROLL Please.....
Just ...OVER ... 21 lbs and is 30 3/4 inches long..a far cry from his 3 lb birth weight!
He continues to be on 24 hour continuous feeds in his J-tube......however recently we have had to shut the feeds off during medication administration...thankfully he has a little cushioning now>>>Thank you God! ...he is still in the lower percentile for what they would like to see for him, but we are moving in the right direction!

We are still working on a lot of oral motor skills ...For those of you who may often ask or wonder.....It is very unlikely that Avery will EVER eat by mouth!

His ability to eat sufficiently enough by mouth to maintain growth and development
(whatever that may be for him ) is something Avery will likely NOT be able to do...along with the fact that the strokes have affected his gag reflux significantly!

YES---- we are still going to work on his oral motor skills.......WHY??
So he does not develop an Oral Aversion, which is, reluctance or refusal to put things in ones mouth, a child that is on prolonged G tube, or other form of nutrition intervention, can contribute to the development of oral aversions. Unfortunately Avery has now stopped using the Binky...(Aka: Pacifier) ... which we are still trying to work on, as we want him to not lose his ability to suck; as this could lead to other issues (with the muscles in his mouth, face and jaw) ... We want to encourage development, which includes putting fingers and appropriate toys in his mouth ...which would be great for the teething he is doing!!

The acid in Avery's stomach is still pretty low....another issue we continue to work on he is on plenty of meds to address this issue....but it is still obviously a continued problem for him!

CCS---Coordinated Care Services ----Is addressing the vital signs & the irregularity's Avery has been having over the last few months ....and we will be seeing a cardiologist to address Avery's autonomic dis-regulations....The last week his vital have been better than I have seen, although his temp is still a low grade temp and this has been going on for several months, his respiratory rate is still high on more occasions than I'd like to see...

The CCS DR was also talking to the team about immunizations and if and when it is appropriate to restart them...the answer to that....is that she got a real mixed bag of answers...NO one seemed to really know...many said it was fine...and Epilepsy...whom I thought really needs to give input about this ... seemed to not know really much about what to do ... ohh boy ... that's real helpful to me...NOT!
She also is the Dr who cultured his G tube sight and found the infection...she also did labs...which showed one of his levels off ...but this is a level that has consistently been off, due to another med he is taking, although they wanted to try to get me to give him loads more fluids (which he could not handle) ... because of the fluids he loosing in his venting bag ...the reasoning was to see if this would affect his level and bring it up ...however, a week later when I brought him to have those labs re-done, they never re-took those levels...or that particular one...can you say....UGH.....

We discussed his O2 .....and she is deferring to the pulmonary team to address this issue!

We discussed hematology and she has schedule an appointment for us to see them...

At this point...I can't remember what else we talked about, but I will say it was more or less a productive visit!

In regards to his Respiratory Status & Saturation level---SATS ---they have been over all really good, he continues on O2, but I have turned the amount he gets down, this is just something I have done over the last couple of days...so far he is doing good with it! There have been a few times over the last week that he had some low levels later in the night or really early in the morning....
His repertory status has been so much better, when we first came home I was suctioning him ALL the time...then for a little over a week and a half I was doing it NOT at ALL, then last week I had to suction him a few times...and he seemed to be breathing much better after...you may be wondering about his SATS and Respiratory Status....but I'm not real sure that his suctioning needs this past week really correlate with his low SATS at times...

In Avery's own way ....in regards to the need for O2....Avery will tell us when he can handle things and when he can't....I have no problem trying to decrease the O2 ...but I also have no problem increasing it, if he is in any distress or showing any signs of distress! I don't however like to change to many things at once...so we will make changes and adjustments one or two things (if need be ) at a time!!

Seizures-----Epilepsy----
WOW....those to words on the same line just get me all worked up inside!
OVER ALL---His seizures are SO MUCH better.....we have not had to give emergency medication but have had several close calls!!!

I am pleased that Depakote has seemed to at least decreased them some....although there are times I am concerned at how the medication seems to take its toll on him, he does not seem as sleepy or drugged from the meds as he has seemed ...but his seizures are also not what we would like to see. No we don't expect them to be completely gone, but we certainly don't like seeing those colonic/tonics, which he has been having,.... As a matter of fact, part of the reason I am still up at this hour is that he has been having seizures during the night to the point that I almost took out the emergency medication ... As an FYI---if we are to administer the emergency medication this does not mean we go to the hospital. Since our last admission and discharge, we have come up with a new plan .....about administering emergency medication!

His Depakote levels (as I mentioned above) are still low...YES---they are within the therapeutic range, but barely...which means they will likely want to increase the mediation!

Balance...that's what my hope/prayer is for ..balance...with all these medications and OUR son's quality of life!

Which brings me to another issue....I am really upset with how our Epilepsy doctor has conducted himself in regards to Avery and his care...(I know Jessica...I need to get a new doctor...I hear ya...and will probably be doing just that)...the only reason I know anything about Avery's Depakote levels is because I had an appointment the day after one of the lab values were done...that was 2 weeks ago...and do you think Epilepsy has called me to discuss them???

Considering they were lower than when he was discharged from the hospital...Well ...NO they have NOT...nor has his nurse called...I am really frustrated with Epilepsy and Not good doctoring at all! Aside from the fact that Epilepsy HAS not even called once since we have been home to see how the new medication is going ......Avery is on pretty high dosages for a little guy and this is no medication to mess around with....just so you can see what Avery is taking for Depakote ...My 18 year old son is taking only 50 mg more than my 1 year old......and my one year old is on 2 other seizure meds (along with a 3rd, which is used for his Neuropathic pain)..So as you can see he has a lot of seizure meds and at a rather high dose.....One in which I don't increase lightly....SO I would like a doctor who is a little more attentive ... Maybe he is someone who can be more attentive...but at what point do I say enough is enough? By the way...that's a Rhetorical question!

SO...Pray for me today..because we are seeing the Epilepsy doctor today...I need discernment and God's peace about how to move forward!

I meet with PACT today for the first official meeting...
What PACT is.....Pediatric palliative care refers to treatments intended to optimize the quality of life. Some of the support they provide includes optimizing pain and symptom management, advocating family and health care provider communication, and coordinating inpatient, outpatient and home care.

Some other happenings going on ......We are in the beginning stages of ordering Avery a special medical bed...please pray that it ALL goes through without any problems!

After bringing ALL Avery's medical equipment up and down the stairs ....EVERY DAY ...twice a day ....we MADE THE MOVE....down stairs....So ...Joe, Avery and Myself reside on the first floor!!! We think that this is in his best interest ..especially as he gets bigger and older! We are ALL adjusting to our NEW living arrangements:)

Andrew has started school and I think he is glad to be seeing his friends again.....Pray for him and that God's light will shine on and through him each day!

In the midst of our moving rooms ...we moved the school room.....and the kids are actually excited for the new curriculum...that will be used for this school year!

Joe is really excited that it is the "Fall"...or should I say ...football season...
Please continue to keep him in your prayers as he balances work, homeschooling...and family time ...along with making sure he keeps GOD first in his life!! He is an amazing father (the kids adore him ) / husband (well I adore him too..he he) and I am thankful to God for him......

ON a side note....I want to thank ANYONE who has sent me notes, messages, or calls......I also want to thank MY brothers whom have been a great support to us/me ....with visits to the hospital and helping to take care of house hold things ...Thank you!! Your words of encouragement and kindness are really a blessing to me and my family.....THANK YOU!!

Prayers are always welcome and appreciated!!!!


Please pray for our RESORT FAMILY Friends "The Hilliard's"...whom are residing at Children's ONCE again!

http://www.fromthebanksofjordan.blogspot.com/

Also ...Please pray for Joe's grandmother (Nanny..aka...Lillian) and his family. Nanny is requiring more support & care than she has in the past...pray for strength, patience, & guidance for the family...

I hope to upload pictures really soon....wait till you see how BIG "The BOSS" has gotten"

We continue to live as Jesus would have US....By faith ..NOT by sight!!!!

2 Corintians5:7

Something to think about.....
This is NOT much of an update...BUT....Something to think about.....

When you spend a lot of time at a hospital you encounter things WE all don't realize happen daily...
No one knows really what they would do if they were to be put in a situation were there child was so sick that you had to actually think about comfort measures and DNR (Do Not Resuscitate)...and should we go home or stay at the hospital!

I will be honest I have thought about ....what I think I might do if put in the above situation (but only briefly) ....this is not really something that I particularly like to dwell on ....because it is so painful.... I was even asked a couple months ago if I have considered if Avery would be a DNR....

My response was that it would be something that Joe and I have to pray about and it would be something that was not taken lightly....and it would likely be a situation by situation decision ;at this time in his life.

Although we have now been home about 10 or so days I am reflecting some;over this past admission.;and things I was able to experience!

What are you doing things for ??
Who are you living for??
Is it for the Glory of God??
DO you Praise HIM in your trials and Storms?


We saw upfront...a family that had to make very difficult decisions for a 2 year old little girl that had inoperable brain tumors.....she was diagnosed last Nov and they did everything known to man that they could do...The last couple months the mom made the decision to stop treatment(which I'm sure wasn't easy)....she wanted to enjoy the time she would have with her little girl outside the walls of the hospital .So for a couple months they visited many many zoos, went to Disney ,went to Chicago ...and just spent the time as a family making memories; that will likely last this family a lifetime.
I can't imagine being an 18 year old mother making those hard hard decisions(Okay I did have to make decisions for Andrew when I was a young 18year old ;but...not to that degree anyway)...but she did.She knew her daughter would not live to see another Birthday, so she was selfless enough to use the time with her daughter in a way, some of us more experienced parents wouldn't think to do .... She also has another little baby (5 months old); that she has had to take care of.
In the few times I have spoken to this mother she has always struck me as a strong young women...who loves her little girl and cares about others.I was very touched when she asked me on more than one occasion how my son was. Here she was making comfort measure decisions for her daughter;asking me how my son is....WOW.....

The way the staff and nurses all comforted this family touched me....
Little Mia died during our admission and just a few doors down from us....She was surrounded by her family and is no longer in any pain.
Please pray that God gives her family peace,comfort strength during this very difficult time in their lives,pray for the staff as they face seeing children they grow to love die;right before their eyes.
I was also touched that Mia's mom came back to the hospital just a week after and made it a point to stop in and "Thank me "....can you even imagine...Thank me ...for what ?? I gave her a card...a card ......just a card...ohh how I would have loved to be there for her at her daughters service,but I guess a card meant something.So don't ever underestimate the meaning of words or a simple card.

God gives you strength when you don't think you have any left....So it doesn't matter that this young mom is so young,we could learn a lesson or two from her....She's amazing;I believe that it is God who has given her the strength!
I am Thankful God placed her in my path I will never forget my 18th Anniversary ...that is when little Mia died and entered the Kingdom with her Father in Heaven. I have learned so much from meeting this young family & the decisions they had to make... God places people in your path for reasons you may not know at the time.

Something that sticks out in my mind as I type this, is words to a powerful song by:Casting Crowns "I will Praise You in this Storm "

Is it important to just be thankful for the storms in life???
I think so...
Will it be easy?? ....Probably not, but was being nailed to a cross easy?!

God will get you through it..SO Praise him; always..and Walk by Faith NOT by sight!

God has allowed me to see and experience what others are facing for a reason...I'm not sure if it's for me to be an encouragement for them or a sign from God that I need to realize what I myself may face one day.....I certainly hope it's the first one.....but if it's the second ...."I will Not worry for tomorrow;for tomorrow will worry for itself"I pray God will allow me to Praise HIM in the Storms and shine HIS light to others!

Sometimes just thinking about things that are painful and knowing God will carry you ...makes it less painful.....


Little update>>
Avery was on the neurology/epilepsy floor for almost 2 weeks.....after his big episode at Chldren's the morning after we were a admitted! He had a few more episodes that required emergency medication, while at the hospital .

NOW...Home for 10 or so days ....At this time his seizures are MUCH better..Praise God!!
Although he is on A LOT of medication ,we are working to find a balance...with medication there is always side effects,and his meds cause sleepiness(along with many others ,but here's this one) We want a child who has the best quality of life.. every day ...so having him sleep a lot is not a great quality of life ...He has been more awake these past few days ...but still lots to work on;and many other issues being addressed....which we are doing.
I will update in a later BLOG entry....

If you could keep us in your prayers as the home school year is upon us.I have STILL so much catch up and so much to do and send into the town....

Andrew goes into his fifth year at the LABBB collaborative this Thursday ...

Pray for Joe and I....just cause we can always use prayers!

I hope you ALL have a Blessed Sunday !!

Remember ...if you have something painful/hard to think about....It is God who has already thought about it and knows the end result... and ...HE will and is there FOR YOU Always!!