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Thursday, October 30, 2008

ER Visit

Last night was the most awful night of my life!

Zach was fussing at 10 pm so I went in to check on him -- he was wrapped in his extension to his pump - so I lifted him out of his crib as I did so he started screaming and squirming. I went to move him slightly so I could help and as I did..........POP - out came his brand new button, with a full balloon (the balloon is what holds the button in place).
I screamed for Doug and I'm so thankful he is calm in a crisis - I ran to get the emergency supplies while he tried to calm Zachary. When I found them - Doug was the hero, the one who was able to stick the catheter in place. As soon as that was done it was off for the ER at our Children's Hospital.

Our experience there was awful! We were sent home without even a real look at Zach's stoma. They told us to call our surgeon in the morning...................UGH

SO the morning came and I called our Dr who said come in ASAP. We got there just in the nick of time because the catheter that we put in place balloon had dissipated. Lucky Zach's surgeon was able to get another button put in. He sent us over to the Children's Hospital (the clinic and hospital are attached) for a test to be done STAT and said "if this shows anything I will take him in for an emergency surgery" Thankfully the test was all clear and as the Dr put it "we dodged a bullet this time"

For now there will be no more night time feeds as Zach moves too much and this will likely happen again if we continue with the feeds overnight. Zach will now have 4 feeds during the day - hopefully soon we will be able to get them where they will only be an hour each, but we need to move slowly to see if he can tolerate them.

What a night and a day it has been!

Wednesday, October 29, 2008

Day Time Feed

10 O'clock Feed

Zachary is doing GREAT!
These are pics of him yesterday at his morning feed - I told him it was time to eat and he climbed on the couch and lifted his shirt so I could hook him up.
I put on a movie for him and he fell asleep within 5 minutes of his pump starting.
Afterwards, I have to flush his extension with H2O in a syringe....I don't do it anymore - he is such a big boy he does it himself ;-)
I'm so relieved he has taken to his tubie so well!

Sunday, October 26, 2008

Zachary: The Update

Hi everyone!
We are home from the hospital.

Zach is back to acting just like Zach – his imagination is running wild and he is running, climbing, jumping around like you can’t believe. If I didn’t see his “tubie” (this is what Zoë calls it) button I’d think he was a perfectly normal kid-o.

Surgery went longer then we thought – we were told it would be 45 minutes but ended up being over an hour and half. The surgeon came out and talked with us in the waiting room and said Zach did great, he was able to do the procedure laprascopically so that was a huge plus. He said we’d be called back in a little while to get Zach into his room. A little while tuned into a ½ hour which turned into an hour – when we were called to the nurses station and told that the OR recover nurse needed to update us on our son’s status – I was handed the phone. When I started talking I heard “we need you to come back into recovery. Zachary is having a very hard time coming out and his oxygen levels keep dropping” My heart sank as I repeated to Doug this information. Thank goodness Doug was there because I don’t know what I would have done. I’m not good at calming a scared kid but Doug on the other hand is wonderful. The nurse was able to get him stable as Doug held him trying to calm him. After he was stable we were sent to our room.

When we got to his room his oxygen dropped really fast and things were a blur we at one point had 3 nurses and a respiratory therapist in the room – the oxygen tank was empty and I remember hearing the one nurse saying “I thought you were going to get him stable before you came here” with the reply of “he was stable” and all the commotion of the respiratory therapist yelling about the tank – Thankfully she had a portable one on her. Zach’s levels dropped to 54 – they should be 98-100 with a child’s going no lower then 90. After that they put him on constant oxygen. His levels did dip here and there, but became more stable threw the night and they were able to take him off the oxygen at about 4:30 in the morning. Of course Thursday night mommy and Zach had no sleep as he was up every 15-30 minutes crying in pain.

Zach needed morphine every 3 hours for the first day. His last dose of morphine was the middle of the night on Friday. We have been able to control his pain since then with Loratab, although, he hasn’t needed any since Saturday afternoon.

The surgeon put in these red rubber bumpers next to Zach’s button to stabilize it and let his stoma heal better. He came in on Saturday to remove them and warned us Zach was not going to like it, that it would hurt and he’d need our help keeping Zach calm. This time Zach’s SPD kicked in and he just smiled at the Dr as they were being taken out. The Dr was in utter shock and told Zach how amazing of a kid he is!

Zach started his feeds threw his g-tube on Friday night. We were all so happy because he tolerated them well – no pain, no vomiting! He was also able to sleep most of the night, only woke a couple of times one of those time Zach was ready for more morphine after he received it he was back to sleep.

We did 2 more feeds at the hospital by Doug and me administering them while the nurse was looking over us. It was much easier then I thought, scary but not too bad. He tolerated both of those feeds as well.

The Dr gave us the okay to discharge as long as all our supplies were there and we felt comfortable. The nurse suggested we stay one more night but told us it was up to how we felt. So we decided to jump in with 2 feet. We figured since they took the IV out of Zach’s foot on Saturday and he was able to move around (and that he did – he was so tired of his room and loved being in the play room or walking around the 6th floor) that if Zach was feeling comfortable so were mommy and daddy.

We got home last night at about 7 – just in time to unpack, try and get some what organized with all of the new supplies added to our house and start our very first home night feeding. It went really well! We were nervous at first figuring out our pump and mixing the right amount of formula for in the bag. It all somehow worked out, we got everything together hooked Zach up and laid him down for bed. He cried at first for a little while but we walked away and within 2 minutes he was fast asleep. I checked on him twice all was a go, so I laid down for bed. Doug on the other hand stayed up for a little while and wanted to get up as soon as the feed was done. He set the alarm but it never went off. We all slept in without any problems. Zach slept the whole night and he didn’t feed his bed it all went right where it should, into his belly.

Of course we still have a lot to get used to – Zach is going to be doing 2 feed during the day for an hour each and his overnight feed as well. They told us this may change and he may require more feeds or longer feeds. – We will cross that bridge when it comes.

As for Zoë, she is doing really well threw all of this. She went to school both Thursday and Friday with little problem. Thursday she was able to go over to her friend Sarah’s house and play until daddy was able to get her. She woke up on Friday crying at 5:30am wanting Zach and mommy but Doug was able to get her on the bus with the promise mommy will be there to get her off the bus. I picked her up with a surprise of camping out in the hospital Friday night – we did and it was fun for her! She slept the whole night and woke up asking when she could go play with Emily. Zoë was very patient as we needed to learn some things before I could leave to take her. I’m so thankful to my friends for helping out with Zoë – it was good for her and a huge help to Doug and I!

Mommy and Daddy are surviving this is a big adjustment but I think it won’t be as long as I thought to get used to it all. This morning Doug took Zach to Publix, right now he is on his 10am feed, and when that is done we are going to head out to Target. I’m thinking, the more we can get out and do the better since no one has been able to tell us how long Zach will have his tube, I don’t want to be stuck in our home forever.

Thank you all so much for the positive thoughts, payers, help, and calls – this all means so very much to us! We promise to keep you all posted as time goes by.


Wednesday, October 22, 2008

Zachary: Then and Now

Then Now
Sweet Little Zachary!

Tuesday, October 21, 2008

6 Months Already?!?!?!

Today at therapy, it was time for Zach's 6 month review.

WOW 6 months!

It all flew by in the blink of an eye!

I was sitting here 6 months ago thinking he'd never make it this far, that time would pass ever so slowly.

We are now fortunate to have added an extra 1/2 hour of PT and an extra day of ST. He needs these - so we are lucky he has a coordinator who understands this!

Maybe in another 6 months I'm telling you all how wonderful Zach has done, how maybe just maybe - he is done with some of his EI services!

I Don't Know How

I don't know how to handle all of my emotions.
I don't know how to tell everyone I'm really not as strong as they'd like to think.
I don't know how I'm surviving and keeping my family strong right now.
I don't understand how everyone is so proud of me, and says they admire me.
I don't understand if I'm doing things the right way.

As you can tell I'm having a hard time with all that is about to happen. My fuse is short, my tears are many!

In less then 2 days Zach is having his feeding tube placed. I've found support on a wonderful website but wish I knew someone in person to turn to.

I have the BEST friends in the world who have all offered their support in numerous ways because we don't have family around to help - you know, even if we had family here I think they would all be here anyway! I'm amazed at by how wonderful these people are in my life - and I have no idea what I would do without them! I am so blessed to have them in our lives! I have never known people who are not family to care so much about others, to put themselves out there and really help a family in need - maybe it is something to do with the south - yet most of us are Yankees ;-)

In less then 2 days I will be sitting in the children's hospital watching my son deal with another new struggle in his life. Hopefully a struggle that will help him survive and conquer all of his other struggles.

In less then 2 days I will start learning what our "new normal" will be!

I hope I have the strength to get threw it all!

Thursday, October 16, 2008

One Week

In one week from today we will be sitting in the hospital, and hopefully by this time (4:00pm) Zach's surgery will be over and done with and he will be safe and sound, resting comfortably.

My mind has not stopped racing since finding out all the information on Monday.
I have my ups and downs.
I look at my sweet little boy and think what am I doing to him, other times I look at his sweet face and know this is going to be what makes him thrive for the first time in a long time.

I am such a planner - if things aren't planned well in advance if drives me absolutely crazy. I've been trying to get the house in order and a list made for things to bring on our stay. Zachary's OT is going to have a list of what to bring to help with his SPD while stuck in the hospital. I need to remember little things to have packed for myself, as I won't be leaving his side. Zoe wants me to buy him a puppy she saw the other day that makes soothing sounds. Of course I'll also need to bring his blanket - or I'll be hearing bebe the whole stay with lots of tears.

I have so much going threw my head, from is everything going to get here for when we are home, to how does this work, to what to bring to the hospital, to what things will be like when we bring him home ect....ect....

I sit and wonder if this week is going to go by quickly or if it will feel as it is taking an eternity to go by...........

Tuesday, October 14, 2008

Letter About Zachary

I just wanted to let everyone know what is going on since we were given the most important information yesterday………..

We have been threw a rough 2 years with Zach but things have gotten much worse this past year, really much worse the past 6 months. As most of you know Zachary’s size has been a constant issue – he has been failure to thrive since he was 3 months old and because of a pediatrician who (in my opinion) didn’t know how to handle a kid like Zach, it took us a year and a half to finally get into the right doctors for some help. After many long discussions, many doctors’ appointments, a ton of tests, a lot of therapy, and finally a larger decline in Zach’s weight and feedings he will be having surgery on 10/23 – next Thursday to have feeding tube placed.

To bring you all up to speed (bare with me as I know some of you know the story) – I knew something wasn’t right with Zach and went behind our doctor to get Zach into our early intervention program at 18mts – when I went to her to tell him the services he qualified for she laughed and said “they didn’t know him”, I in turn said “you’ve lost a patient” and took Zach to our new dr (I swear she is an angel on Earth)– who as soon as she saw him said “we don’t have time to waste” and sent him to numerous specialists saying she knew his case was too much for her to handle. Zach has been tested for everything under the sun trying to find what is wrong – as everyone he has seen agrees something is not right!. For the last 6 months we have been on a better track but still don’t have all the answers. By now I’m at my wits end as he sees his pediatrician, geneticist, endocrinologist, GI, dietician, neurologist, allergist, ophthalmologist, ENT, developmental pediatrician, ped dentist (this isn’t for normal visits like one would think – he has a very small, high pallet, and extra teeth – so needs to be monitored more closely), and now will be monitored by the ped surgeon, plus his SLP, OT, and PT. You’d think with all these people they could sit and talk, brainstorm for what is happening to Zachary.

He has been diagnoses with FTT (failure to thrive), in a full year Zach has only grown 3 inches and 3 lbs (normal growth is 4-5 inches and ½ lb per month). Zachary also has Dyspraxia (motor, oral, and verbal) – not a late talker, his brain knows what he wants but the signal does not go to his mouth to let him speak. He is coming a long way - from no sounds to sounds, to can say some words although not all the time – we try to use sign but the motor dyspraxia is affecting this, so our main source of communication with him is a PECS system. Gastroparesis: This is a delay in the emptying of the stomach. We are waiting on an official diagnosis of Russell Silver Syndrome – basically a very rare form of dwarfism. He has hypotonia aka low muscle tone – this is affecting him in many ways one of which may be his eating another is how clumsy he still is because he doesn’t have strength like a typical 2 year old. He also has SPD aka sensory processing disorder. Last but not least is his anaphylaxis to milk and plain food allergy to soy.

Russell Silver Syndrome tends to be diagnosed clinically which makes it very tricky if the Geneticist hasn’t seen very many cases. We have one Geneticist who says “I think RSS is it” and one who says “I’m not too sure” There is a blood test which we just ran yesterday but chances of finding it are so slim (7-10% for one of the tests and 20% for the other) even if the test comes back without it – RSS is not ruled out. In mine and Doug’s heart we feel this is what Zachary has.

Right now our priority is to get Zach to grow this will be done with the help of the feeding tube – it is nice to know all of his Drs agree with this being done. Zach will be receiving constant feedings threw the night as well as 2 more feedings with his pump during the day. We will be able to feed him by mouth as well (if he will take it – as lately he doesn’t want to eat) the more he takes by mouth the less he will need from the tube during the day. They have told us this will take 3-4 months before we notice how well it is helping him.

When we asked the surgeon how long he will have the tube he replied “some people have them for life” When we asked the GI the same question he replied “it will not be a short term thing”

Here is a link to the exact tube Zachary will be getting next week ---

We are thankful that they will not be trying the NG-tube first as our stay in the hospital would have been roughly a month. Right now we are looking at a 2-3 day stay if the surgery goes as planned. He is planning on doing it laparoscopic instead of an open surgery but will do whatever is in Zach’s best interest once in the OR. We won’t know until the day of the surgery if they will be placing the tube like a g-tube, j-tube, or a gj-tube.

We were also told about another surgery they typically do at the same time called a Nissan but for Zach’s case right now they will not be doing it – however it is a possibility in the future.

Both Doug and I have a million emotions running threw us right now – the life we were used to is about to change. We are always reminding ourselves it is going to be difficult but it isn’t something we can’t handle and it is what is best for Zachary now and in the long run!

I don’t want to forget about Zoë – she has been the best sister that has ever existed! She has asked questions, and looked at the tube. She has been telling Zach he will be fine and that it is “cool” he’ll get to eat threw his tummy. She even came up with calling it a tubie hose. I’m not 100% she gets this – heck Doug and I still don’t completely get this! We just hope that we can keep her feeling special as she is and always has been.

Thanks for reading and sorry about the repeat for some of you – I wrote and just needed to get it all out at one time. Repeating myself is not so easy anymore.


Monday, October 13, 2008

The Verdict Is In

The final decision has been made................

Zachary is getting his surgery on Thursday for his feeding tube.

I am still waiting on a call, as we were unable to speak with the GI (he was too busy and we had no appointment) We did get a chance to sit with his ARNP who went back and asked questions with him as needed. He agreed on the surgery and now the question is which type would he like the surgeon to preform, what type of tube (g, j, or gj) and if a nissan ( also needs to be done at the same time. So, there is a little more waiting to be done - a little more that is still unknown - BUT the main wait is over Zach WILL be getting this tube and very soon!

The surgeon told us there were 2 ways the procedure could be done and he will do which ever the GI would like - but he likes to do it laprascopically. He did say he wasn't going to use the peg tube (this is a picture of a peg: ) he likes the one that is flush with the body because with the peg it can be pulled out too easily and is too long on the outside of the body, also because normally you would start with a peg and in 2 months go back and switch to the tube he is going to use - so might as well do this as the only step. I didn't catch the name but I'm assuming this is what it will be . If the feeding tube is all that is going to be done he said Zach will have the tube placed for 24 hours then start his feedings, he will be in the hospital for 2-3 days. This also leads me to another question for our GI - if Zach will get admitted the day before surgery - this was talked about at some point before.

We did find out that the feedings should all be at night with 2 during the day, while still allowing him to eat by mouth, the more we get him to eat by mouth the less he will need to have via the pump during the day. The formula for his pump will be 100% covered by insurance because it is a medical necessity (they told us children who take this by mouth insurance will not cover) so we lucked out there. We will need to get Zach a pump, they told us they will work on getting him the smallest pump that they can find. I'm hoping it may be one of these, hopefully the top one ( as we will be taking it with us when we leave the house and it is easiest for him in the mini backpack.

I could go on and on but I'll wait for another day...........

Sunday, October 12, 2008

My Little Man and Our Big Day Tomorrow

Here is a picture of my little man taken 2 days before we get the big information about the feeding tube.

The more I think about tomorrow the more worried I become.

Yesterday I had called Kori. Not knowing she was in town, she asked me to come meet with her - knowing I was down and worried about the upcoming appointment on Monday. I reluctantly went and met her at the park. It was a good time and just what I needed, time with one of my best friends, and some fresh air.

We had a great time!

Zoe and Alex (Kori's son who is a day younger then Zoe - her BFF) got to play in the park, run around, and ride the carousel. They had a blast! Zach sat on a park bench the whole time - I think he enjoyed himself as he could see the tour trains that were driving by, and didn't hesitate to point them out to Kori and I.

Kori (who is also photographer) was also able to get some great shots of the kids. I'm sharing this one, because it is Zach - his personality and all - a perfect shot of my little man!

Thanks Kori! As always, you know how much I cherish the pictures you get of both of the kids - but the ones of Zach truly hold a special spot in my heart because no one captures him as well as you can. I swear you are the only person he trusts (besides Doug, Zoe, and I of course ;-) Thank you so much for the park, shopping (I needed that LOL), and dinner - it was a GREAT afternoon!

As our day is coming to an end today - I ask for positive thoughts, and prayers from anyone willing to send them our way. Tomorrow is going to be a long day and I hope I am able to maintain a positive attitude no matter what we find out.

Saturday, October 11, 2008


Thank G_D for good friends!

We have had a long, bumpy road we have been following lately and it isn't coming to an end anytime soon.

Last night I went out with a friend of mine, we didn't do much - went out for margaritas (the best I've ever had ;-) and guacamole at a restaurant I've never been - it was fabulous! Good food, amazing drinks, great conversation -it was like I could breathe for the first time in a long time. I needed last night more then she will ever understand. I am so thankful for her! Thank you so very much Tracy!!!

Last night also helped to remind me of my other friends and family (you all should know who you are - my FL friends, my MI friends and family, my online buddies from BBC, my TNT girls, and a special friend in Chi-town) that I am thankful that you all have cared enough to ask questions, be there when I've needed to cry, be there just to listen to all my venting, laugh with me, or just sit in silence with me. If you guys are reading this "Thank You!" Your friendships means so much to me!

Friday, October 10, 2008





I just got the best news EVER.....................Our insurance is going to cover 100% of Zach's testing for RSS!!!!!

I am so ecstatic I was jumping up and down after I got off the phone!!!! Even Debbie (our genetics counselor) was so shocked that it was going to be 100% covered, she has never seen this test covered before!

I swear this is a sign.......maybe, just maybe, it will show up and we will with out a doubt have a name for what is going on with Zach! I felt like if we were going to have to pay for the test that it would definitely show up with nothing, and that still doesn't rule out RSS - just because that would be our luck. Now it is going to be covered ---- please, oh please, let us have an answer!

I need to remember one test only has a 7-10% chance of finding it and the other 20% - if we find nothing with this test, RSS is still not ruled out. I just want to have a definite answer on this, I need to have a name.

In my heart I know this is what Zach has.

It is much harder knowing nothing then knowing something!

Thursday, October 9, 2008


Is how Zach says bye these days......................

Today little man had to say "buh biiii" to his favorite therapist, Ms. Kristin is going on maternity leave and will not be back until the beginning of January.

As we were leaving Zach gave her the biggest hug, kiss and of course a big "biiii". I had to stop myself from crying, as did Ms Kristin. It is amazing how close you become to someone you see 3 days a week for the last 6 months Ms Kristin almost feels like family - heck, the whole therapy place feels like our extended family.

We wish Ms. Kristin the best of luck with the delivery of her new baby girl! Hopefully the next couple of months will fly by for us!


Monday, October 6, 2008


Today was not really a good day, it wasn't bad, just not good.

My mind is spinning - I go from alright, to not so good, to down right depressed - I'm feeling so very manic right now. I wish the world would stop just for 5 minutes to let me breathe a little bit.

I had changed Zach's appointment with the GI ARNP from the end of this month until this afternoon. My hope was that the Dr would be there and she would have him come in, this way we would see him before seeing the surgeon on Monday. That was wishful thinking as Zach's GI is out of town this week.

Zachary got weighed when the MA brought him back - too bad she wasn't consistent like she should have been - the scale showed him a whole 2 1/2 lbs larger then he is. The ARNP took him and did it the right way -- Zach has lost weight since our last appointment there 3 months ago - 1 1/2 lbs lost to be exact.

Zach's medicine is causing side effects so we are to take it down from 4 doses to one just at night to see if the side effects go away. If they don't we are to stop the drug ASAP.

We had a long talk about the feeding tube and from the sounds of it Zach may end up in the hospital for about a month. She said in a perfect world they would start with a ng-tube ( ) for a week to two weeks to see if he tolerates tube feedings - if he does then at that point he would have his g-tube placed, but because of his age she said the surgeon may just go straight for the surgery. I'm not sure how I feel - I want to help him, but if it could be something he won't tolerate I'd hate to put him threw the surgery - at the same time it is something that can be taken out if it isn't working for him. She also said when this all happens she would like to see him being fed by the tube during the night with 1-2 feeding during the day and supplements by mouth during the day as well.

OF course we won't know what is happening for sure until next Monday when we meet with the pediatric surgeon - he is the one who makes the final decision. After that appointment we are to head straight to the GI's office for an impromptu appointment with him, the ARNP, and Zach's dietitian.

I think my mood swings are plain and simple - they are happening because we are so unsure of what is going on. Pretty sure he is having the tube, but which one?!?!? As it seems there is no other way to help him grow, but unsure of when it will happen - in a week in a month?!?!?!?

I'm longing for the day where my head stops spinning!

Thursday, October 2, 2008


I was looking online and came across this book. I thought it was cute, and a helpful way to explain to Zoe and Zach what is about to happen.

This is something I just found with the most in depth detail of what is going to be taking place.

Wednesday, October 1, 2008

OH The Decisions.....

Today was really a great day for the most part...

This morning we had to go to Zoe's school to see her receive her award. 44 children in the school (one from each class) received an award for the Character of Fairness - "Zoe has exemplified fairness by: always thinking about how her actions will affect others. She always tells the truth, takes turns, and plays by the rules". I was so very proud seeing my little girl becoming such a big kid. Standing up there as these kind words were read about her, in front of so many people. What a proud moment as parents it was!!!!

After that was done it was home for Zach and I, and off to work for Doug. I had calls that needed to be made. One of those calls was to our geneticist. We found that there are 2 test she can give Zachary to determine RSS...

One test has a 7-10% chance of finding RSS

The other has a 20% chance of finding RSS

These test will cost $900 ---- $900, 900 dollars --- for the possibility of not finding anything! If we find nothing, it DOES NOT rule out RSS! If we find something, that is all it is, something - a name for what is wrong with Zach. RSS is not fixable, it is treatable - but no matter what life will always be different for Zach.

So, we could pay $900 to find nothing, or maybe to find something. No matter what, the treatment is still the same - a feeding tube, and/or growth hormone injections.

Our geneticist and our pediatrician both say the same thing - if we need 100% proof (but the only way we get that, is the slim chance the tests say positive) go for it. If not, we are taking the right steps towards helping Zach, the same steps we would take knowing it is RSS without a doubt.

According to our pediatrician there is enough in her opinion to just go ahead and call it RSS. Our geneticist wants to observe him again before giving her opinion on the matter. Since he has not grown since our last appointment she feels RSS might be what it is but needs to see him again.

Doug and I are going in on Friday to discuss all of this with Debbie - she is from the genetics department. I want to weigh out all the pros and cons before we make a decision one way or another on the testing.

I also needed to make a call to the Pediatric Surgery Department. Zach's evaluation is all scheduled for Oct. 13th - Just 2 weeks away. They told me that his g-tube surgery will be anywhere from a week after to a month after that appointment, depending on the Drs schedule. Really right around the corner. I have so many questions, so much concern BUT overall I know this is the right thing, the right way to help Zach.

Decisions - I can't wait for a day where I have none to be made!