Thursday, May 28, 2009

Guess What????

We are GOING HOME TOMORROW!!!!!!!!!!!!

I know, one minute he has pulmonary edema and the next he is going home. Clarification----In rounds this morning the drs. weren't convinced it was PE b/c it was a week after he was septic and just did not make sense. They did another xray and it looked much better. So what they are thinking that since his port was placed on the right side and he had to lay there for a few hrs. that some fluid built up. He sounded much better today. So I am thrilled about that. According to the team, he dodged a major bullet this time. Thank the Lord.

They rechecked his kidneys and they are still swollen. No major concern as they are all in agreement that it is some reminisce of the sepsis. There was no evidence in his heart, kidneys or eyes for "yeast balls" so all is well.

I am so excited that after 2.5 long weeks we get to be a family under one roof again. I have missed so much work and we are going to be super poor next month from all that was missed. But I am happy that we are going home.

Thanks you all for your prayers and support.

Now remember the blog may get a little boring for awhile, boring is okay for a bit. LOL

Wednesday, May 27, 2009

The day did not start out very good. The first thing I learned was that Avery was not on the OR schedule. I was so pissed and made it VERY clear to the team that he was not going another day without a port placed. I new the good IV he had (not the shoulder one) was going to blow at anytime and I was right b/c it blew an hr. later. So the team basically begged the OR to get Avery on.

The day got alot better, thanks to my friend Dana. She hung out with me most of the afternoon and helped pass the time while Avery was in the OR. I so appreciate her friendship.

They got the port placed with some difficulty but it was fine. I finally got back to see him at 8:30 pm and the OR nurse told me he struggled quite a bit respiratory wise which is not his norm post op anesthesia. Well the did an xray to check his port placement which was great but they found the he had moderate pulmonary edema.

What?????? How is that possible. You usually get this when you are overloaded with fluids and that was the case last week but not recently. His xray from 4 days ago did not show this. The drs. are very confused as to where this has come from. He does not look like he is retaining fluid. They may end up giving him a duiretic to get rid of the fluid on his lungs. I am just baffled and so are they.

This poor kid really needs to catch a break and we need to get out of this place. The more you are here the more problems you will find. He is just such a trooper though. This does explain his recent respiratory issues though. I will keep you all posted.

Once we get out of here my blog may get a bit boring folks, LOL

Tuesday, May 26, 2009

So this!!!!!



Is how Avery spent most of his day today :(

He was so incredibly junky today and had copious secretions. Poor kid started out his day totally grey and pale. He was in desparate need of a blood transfusion. So there was NO way he was going in the OR today for his port. He got the blood he needed and perked up. BUT.... he had to be suctioned almost hrly. and it sounded just after suctioning him that they did nothing. He was so pooped and really needed the help of BIPAP which usually preserves his energy.

He was down to 1 IV but he needed one for blood and one for TPN. So the nurse paged the IV team and the conversation went like this:

IV Team: we got a consult for an A. Na***, please don't say it is Avery
Nurse: yes it's Avery
IV Team: OMG doesn't he have a port or a PICC line yet
Nurse: No you guys couldn't get the PICC
IV Team: big SIGH!!!!!, Okay not sure what we can get but will try

So he had one spot left and I can honestly say that I am so glad I was not here to see it. It is in his left shoulder "Ouch" So if this blows we are pretty much screwed. He is STILL not on the schedule for tomorrow for a port. Grrrrrrr. He HAS to get on for tomorrow. This is ridiculous as if we haven't already waited out the long weekend until the drs. got back from their vacation. Mind you someone from surgery came to see us bright and early this morning at 6am.

So lots of prayers are needed:

*That Avery is not brewing another respiratory infection
*He gets his port tomorrow
*That I can keep my sanity


Thank you all as always

Monday, May 25, 2009

It was SOO hard to come back into the hospital today after such a nice weekend at home. I went into work today and then came to relieve Rick. It was such a beautiful today too. This will be our second yr. in a row being at the hospital on Memorial Weekend. :(

Over the weekend Avery had lost both of his IV on sat. morning so they tried three times to get a PICC line in him to no avail. They even did an ultrasound of his veins before but was just not able to thread the needle through. Very discouraging for your kid to only be 3 yrs old and have such limited access to his veins. Avery has also been having some increased pain issues so we just upped his pain meds. So glad my mom was able to be with Avery this weekend. She did a great job.

Infectious Disease found the specific yeast and they said he is colonized with it and when the right environment comes about (like prolonged antibiotics or hospitalization) and you have a foreign body like a port (central line) then the yeast becomes active. So as you can see this is NOT good. His access stinks which means everytime he has a yeast in his port which may happen again then the line will have to be pulled and we are screwed. Hopefully they can come up with a preventive med. to keep this from happening.

This has been a LONG 2 wks and I have MAJOR Hospital PMS and I don't want to go through this again.

The plan it to HOPEFULLY get a new port placed tomorrow. Prayers for a smooth placement are much appreciated. He will need to get a blood transfusion either before or after surgery has his levels are very low. He will go home on diflucan (IV) for 2weeks to continue to treat the yeast.

Then if all the cards, stars, and whatever else align. We can HOPEFULLY go home on thurs. Wooohoooo. This place is getting so depressing.

Sunday, May 24, 2009

Saturday, May 23, 2009

I got to go home and sleep in my own bed which was SO NICE. I think Isaiah missed me because he kept grabbing me and smiling. He is so cute and just hearing his laughs makes life so much better. Janessa and I got to hang out at a friends house for a bit and hang out with dad. Just nice to be home but it would be better if Avery was nicely tucked in his own bed.

Speaking of Avery, he continues to do well. He had a good night last night but by the morning he blew both of his IVs. UGH. The TPN was not even in one for 12 hrs before it blew. So the task is to get another IV in him today so the can give him his antibiotics and TPN. I think they will not be able to go much longer before putting a PICC line in him. My mom is there is just might pass out from it all but she will be okay.

They ultrasounded his kidneys the other day and it turns out that they are BOTH enlarged with dense areas.

So what does it mean? Damned if I know!!!! They think it is either from the antibiotic he is on for the yeast which is a "big dawg" but he has to be on it. Or that there is yeast in his kidneys. Hope it is not the latter. Think the plan is to get through this infection and see how the kidneys are after. Fingers crossed they resolve on there own. They are also continuing on following his heart to make sure there is no yeast there. His eyes need to be checked b/c it can also hide behind his eyes. You see how nasty this yeast is. Very scary and I sure hope we are able to kill it all and not have to deal with this again.

We still have some bumps ahead and I suspect Avery will not be coming home until late next week. As you can imagine I have missed about 2 weeks of work and will ultimately be poor so I am working out things so that I can get work done this week. Its the end of the month afterall which is crunch time with my job. Patient are already calling asking where their hearing aids are.

Too many responsiblities but no other choices. Gotta do what I gotta do. Just thankful that God gave me the gift of being such an energetic person.

Friday, May 22, 2009

This Boy!!!!!!




Just likes to bring you right to the edge, just to pull you back. After being on BIPAP (the machine you see him on) for most of the day and night, he is back to himself. Wooooohooooo. It was definetly all the prayers guys, thank you. He has had no fever for over 24 hrs. Blood pressures are back to baseline. Got a good looking heart and kidneys. His swelling has gone down and many smilies this morning. Phewwww is all I can say. I really think he is going to be fine. So we just need 2 more negative blood cultures to start talking about putting a line back in him. Now remember Children's has it's own language, and that is we try NOT to work or go to surgery on a holiday weekend.

What to do??? He has an IV that is on its way out and one left. We are now struggling to get blood from him as he has been a pin cushion this week. I am thinking they may end up putting a PICC line in him (this is not a central line but a much better peripheral that can last over 6 wks) This may be better as it will allow all the time we need for his body to heal and make sure there is not any yeast left at all. I do know that another part of Children's language is to do the safest thing. I am very lucky to be at this place. I know I have my complaints at times but when it comes down to it, I would not take my kids anywhere else.


I plan I going home for the weekend and spend time with Rick, Janessa and Isaiah. My mom is coming for the weekend and I think things will be quiet. Again, thank you all SO MUCH for the prayers and checking up on us.

Have a Happy and Safe Memorial Weekend.

Thursday, May 21, 2009

Look how pooped he is :(



Today has been quite busy and overwhelming. He has had an echo and renal scan and another difficult IV placement and more blood. We are running out of spots though and not close to placing a line yet. He is holding his own right now but from what the drs. are telling me that these yeasts can be very nasty and an up/down long battle.

More prayers for one of Rick's students who was killed in a car accident yesterday morning. She is a senior and a great kid. Our prayers go out to her family and friends and extended Central family.
Avery had a very worrisome night. His blood pressures were unstable and he had some fevers. This is all very complicated but from what I do get from it all is just not good. His body is septic and very sick from this yeast infection. He is being watched VERY closely for a number of concerns. We are hoping to avoid placing a central line today but if he becomes critical then they will have to. I am praying that we will not need to go to the ICU b/c that means things have worsened.

I am asking that you pray that we can get a hold of this infection before it starts shutting down his body.

Thank you all.

Wednesday, May 20, 2009

Today was pretty low key. No new findings. Avery got to enjoy a little music today. For once I remembered to bring his cochlear implant and he really seemed to enjoy the songs, especially the Itsy Bitsy spider. He had some nice smiles. Just brings tears to yours eyes that he can manage to throws smiles even though he feels crappy. He started to have fevers again tonight and his blood pressures are a little wonky which is very unusual for him. The drs. are trying to tell me that it is to be expected but of course I am not convinced. I will give them a day but will be on them again if he does not seem better. He still has one IV and they were able to get the labs they needed to so far so good. I am sure it because they are not putting TPN through his IV. Hey whatta know they actually listened to me this time.

I got to get out with a good friend tonight for a few drinks. Wow, the real world and nonmedical conversation. Always a good thing. Thanks Amanda.

Just counting down the days until we have 3 negatives of blood cultures so he can get a new central line and on the road to recovery. Fingers crossed.
Thank you Lord, Avery overcame one big hurdle last night. He was extubated successfully, Wooohoo. Told you he is a strong boy. Although he lost both IVs in the OR :( They were only able to replace one after trying 6 times. So as you can see this is going to be our big problem. He needs to get 3 IV antibiotics and fluids/TPN through these IV. The antibiotics are the most important b/c he has to have 2 negative blood cultures in order to get a new central line placed. Avery is a HORRIBLE stick (which blows my mind b/c he has not have IV in over 8mos) so we really have to come up with a plan today. I am less worried about his nutrition and more about getting rid of this yeast. I would rather push the heck out of his j feeds and have his suffer for a few days (and give him nausea meds) then blow IV constantly b/c we are running TPN through them. If you run TPN through an IV it blows them much quicker.

It is just a bad situation all around. We are damned if we do or don't. But I have faith that we/he will overcome this b/c I just know my little man. He will surely give me gray hairs early while doing it but that's okay. Again, I cannot thank you all enough for the thoughts and prayers. I love reading the comments it really helps get through the day.

Tuesday, May 19, 2009

Here it is 9:30 and Avery JUST went into the OR to remove his central line. The surgereons came to the floor and agreed he absolutely needed the line out immediately, well in Children's language that means at least 4 hrs. So true to fashion while he has been so very sick with fevers and chills b/c of this line he is just now getting it pulled. Grrrrrr

They are saying there is a good chance they will not be able to extubate him in the OR b/c of his fever and his current pneumonia. So he will be going to ICU, for us luckily that is only a few doors down from where he is now in ICP. Another concern is his blood pressures which were very low earlier today due to sepsis. He said he was in "warm shock" this morning. Which I have never heard it termed that but knew it was not good.

So the next few days are going to be tough b/c he cannot get a new line put in until he has a few negative blood cultures. He will also need a full body scan to look where else the yeast is hiding. He will be on IV antibiotics for a few weeks as well.


So as you can see this is going to be a long haul. But we all know Avery is a fighter for sure and will come through this. Thank you all for you thoughts and prayers, it really helps.

AVERY NEEDS PRAYERS

He does infact have a line infection and it is not a good one. He is growing yeast and it is in his bloodstream as well. This is NOT good. He will be going to surgery at some point today to have the line pulled and we will have to wait a few days for negative cultures to put a new one in. They are already having great difficulty just getting an IV in him which he will need over then next few days. If they are unsuccessful with that then they will put in a femoral line which is not the best option b/c of the yeast but they have to pump him with antibiotics to get a hold of this infection. Please pray that he is able to clear this and they are able to successfully place a new line in him.

Thanks so much. I will keep you all posted.

Monday, May 18, 2009

There is always a curveball with Avery

We were so ready to go home for tomorrow. I know I definetly was I a week here is just too long. Avery was up crying last night from 11:30pm-4am, it was awful. He was in the best spirits today WHEN...............................................

He spiked a high fever. GRRRRR, UGH!!!!!!

He stopped his IV antibiotics for his line on sat. night and I was questioning the drs. this morning that they did not do any follow-up blood cultures. They thought they did but I knew they did not. So the just sent cultures. I am so worried that this was infact a line infection that just did not get treated long enough b/c they assumed it was a contaminate. So we obviously are NOT going home tomorrow. I honestly am glad they caught this now rather than us being settled and needing to come back in.

Unfortunately I have missed alot of work and so has Rick. So Avery will have to hang out here during the day. Luckily I am very comfortable with the staff here and they all know his so well but I HAVE to go back to work.

NEVER a dull moment.

Sunday, May 17, 2009

Janessa's recital pictures





It was great to get out of the hospital for a day and enjoy Janessa's recital with Rick and be able to go to dinner with friends. Janessa and all the girls did such a great job. It just sucked to have to go back to the hospital. Avery is doing much better and honestly could go home today by the way he looks but he cannot go until tues. It is because they are decreasing his TPN but it takes a bit for the pharmacy to make the changes. What a pain.

We are also trying to come up with some things to help combat his chronic pseudomonas. We have been in the hospital quite a bit with this lately and it is ridiculous. Avery sounds alot like a kid with cystic fibrosis in terms of his secretions and how he is not able to handle them, even though we have ruled out CF. So we are going to try a few treatments that are used for CF kids to see if that will help.

He central line seems to be clear of infection. YAY. They have stopped his IV antibiotics and since he is here until Tues. they will be able to see if he is getting sick again and if so they will treat him. But since he was negative in his bloodstream then I think that is a good sign. So this is great news that things seem to be clear.

Friday, May 15, 2009

Hanging in there

Avery is holding his own. Yesterday he did not have a great day b/c his secretions were catching up to him. We got his gj tube changed yesterday and he had a blue spell and scared the pants off of radiology. He slept most of the day b/c required 4 liters of O2 and very frequent suctioning even through the night. He currently has a left sided pneumonia and pseudomonas and a couple of other bacteria growing in his lungs and he definetly has a line infection. With all this he should be VERY sick and he probably would have been even a few months ago. But I believe since his nutrition status has really improved he is much stronger to fight all of this. Thank goodness for TPN in that respect.

They also are increasing his vancomycin IV to help better fight the line infection and still don't have a name to the bug. It is a gram positive cocci so not sure if that is a tough one to clear. Of course in the back of my mind I am scared that he will now have difficulty clearing infections and this would be very bad for him. If he ever needed his line pulled b/c of the infections, we will be screwed. Avery is a VERY difficult placement b/c his arteries are horrible. The last 2 placements were extremely difficult and there is worry that his access is limited. He needs access to survive b/c he is dependent on TPN for his nutrition. But we are not there at all yet and I am trying to take it one day at a time and I am sure this infection will clear easily. Power of positive thinking right. Plus this kid is one hell of a fighter and surprises us everyday.

I am happy to be able to get out of here today. Janessa has recital rehearsal today so Rick will be relieving me. Ooohh fresh air. Can't wait to see Janessa and Isaiah and sleep in my own bed tonight.

I will continue to update but hopefully it is all uphill from here :)

Thursday, May 14, 2009

To Look At Him You Would NOT Know

He is growing all kinds of bugs in his mucous and his blood. So his time has come that he looks like he has a line infection :( He is growing a gram positive bug in his line which normally could be a contaminate but b/c he is growing the same stuff in his mucous things are pointing more towards a line infection as well. This is why his blood cultures always have to be done when he has fevers b/c you just never know. He is looking pretty good given what his labs read. He has already started on IV antibiotics and tomorrow we should know what the specifics are so we can make sure he is on the right one. My only concern is some of these gram positives can be hard to clear (like pseudomonas which we know he has in his mucous already) and they can keep coming back. I hope he does not have pseudomonas in his blood b/c that would so suck.

Some good news though is his anemia looks improved so I don't have to worry about iron infusions or blood transfusions for awhile. We are trying to cut back his time on TPN to help his liver. The nutritionist just came by and said we MAY be able to cut hit down to 18 hrs. a day instead of 20hrs. which is good and hopefully we can keep increasing his feeds slowly to really reduce his TPN time.

So it sounds like he may be here for a bit. UGH

Wednesday, May 13, 2009

Here we sit in the ER. He spiked some high fevers last night and was just plain miserable. I am pretty tired b/c I kept watching his monitor b/c he heartrate was over 190. He woke up in the morning pretty happy but vomitting. It is always one of those things that you think maybe you don't need to bring him in. But when it comes to having a central line and high fevers there really isn't a choice. He had a fever of 101.9 in the ER and a bit junky but still happy. Again, he seems like he looks too good to be here but we have to wait to tomorrow for the blood cultures. Also I spoke with his TPN dr. and where Avery is on 20 hr TPN and this is not good for his liver, we are trying to keep his feeds going. I asked about dropping his TPN to 16 hrs a day and b/c of his big weight gain he thinks it may be doable while we are in here. Wooohooo. This would be great b/c he would have more time off the pump a day and maybe some pool time this summer. So I am anticipating a quick and quiet stay but one never knows with Mr. Avery.

Tuesday, May 12, 2009

Avery is Officially sick

UGH!!!! I knew he did not have a great day today and he went to bed tonight needing oxygen which lately has not been atypical for him. Our the tell tail signs that he is spiking a fever while sleeping is his heartrate skyrockets and so does his respirations. He is currently on 3 liters of O2 to keep his sats. at a comfortable level. Right now he is only registering a low grade fever but he is acting much sicker so I am sure it is to come during the night. Of course there is no nurse tonight so I will be up all night checking his temp and O2. I honestly don't know WHERE or how this kid gets sick, he NEVER leaves the house. I am hoping to ride this out at home, think if he gets through the night and wakes up okay tomorrow he may but then again don't be surprised if we are back in. Of course this is not a good week as Janessa has practice for her recital on Friday night and Sat. is the recital so if we do go in I will need to find someone to take over at the hospital.

I will keep you posted.
Hope everyone had a great Mother's Day. We sure did. It was a great weekend overall. It is great to finally see Isaiah back to his crazy self. The physical therapist that was working with Avery started with Isaiah today and he was just giggling with that infectious laugh of his that literally brings happy tears to your eyes. So it is so wonderful to see Isaiah this way. I am also excited b/c we are really going to get him going with the bike and in the pool. Because he is my easiest kid I feel at times like he gets the least attention from me b/c he is such a good boy. So I feel so much better when I know he is "getting his" KWIM? Granted he has the best school nurse and gets alot of attention but it is mommy's guilt.

Then there is Mr. Avery who can't help but take all of mommies attention b/c he thinks he is an only child, lol. I am hoping it is allergies as poor Rick is feeling horrible. But.... he woke up with this horrible croupy inaffective cough today. He was quite puky all day. He just plain does not feel good today. So we will see what is brewing with him. I swear he does not get more than a week before he feels like crap again.

Although on a funny note or rather gross note. He woke up this morning just happy and talking to himself and sounding like a seal. So I enter the room to find him with a completely OPEN diaper with POO EVERYWHERE. Well I did not even know where to start and meanwhile he thought it was hysterical. Crazy thing is, I have NO idea how he got it open. Either mommy was half asleep during his middle of the night diaper change and did not fasten it (very well possible) or he magically figured out how to unfasten it himself. LOL.


So stay continued b/c you NEVER know what is next.

Saturday, May 9, 2009

What a Great Weekend

Thanks to Maureen of pallative care and another angel we have been able to go the the Red Sox game on Friday and Mother's Day. Friday night's game was a blast with great company, weather and of course a win and also great seats. Janessa is one lucky girl. Today we also went to the Central baseball game which was nice and also another win. Wooohooo. Then me, Rick and Janessa went go karting and hit the batting cages on such a nice day. Janessa is a better driver than me, LOL.

Tomorrow will also be nice b/c we are taking my mother in law to dinner and then off to another Sox game. Also I already saw my gift from Rick which is a beautiful wicker outdoor swing. Can't wait for it to come in, even he is excited about it. Thanks babe.

The boys are doing well and we enjoy everyday we are not in the hospital of course. Avery has still been sleepy but doing okay, just worried he may be needing another blood transfusion b/c he levels have been dropping again and his is lethargic at times.

Wishing all mommy's a HAPPY MOTHER"S DAY tomorrow.

Wednesday, May 6, 2009

There truely is NEVER a dull moment in our household, lol. Me and Janessa were on our way home from hip hop when "WHAM" we get hit from behind. Meanwhile, I just realize we have been hit and Janessa is screaming like a wild woman. I honestly thought she was missing an arm or something. But no, just Janessa being Janessa. She starts screaming "Call the cops" I could not help but laugh. Bad mommy. So I then get out of the car to figure out what happened. I was coming off a ramp and stopped b/c traffic was too heavy to merge, apparantly two cars behind me did not get the message b/c he hit someone who hit us.

Luckily I have such a great husband who took care of ALL the details. I just basically dropped off my van today and got a rental and my van will be ready sometime next week. I honestly could not handle doing this right now so I am glad he took care of everything. Such a good guy :)

Isaiah is still recovering slowly from his cycle. Hopefully tomorrow he will be back to himself. Avery has been very happy. In fact, I think the new med for his gallbladder is actually making him sleepy. Not necessarily a bad thing. He slept through the night on Sunday for the first time since God knows when. Yay for sleep. He is like a different kid for the better so I am wondering if his gallbladder is what was causing him pain. Either way, I am happy. It is just great to see him laughing so much.

More good news is we have been able to increase his j feeds to 14 cc/per. Yeah, I know it is not a whole lot. One ounce is 30cc so that means he is tolerating almost a half ounce an hr. It is my goal to keep increasing as much as we can so we can decrease his TPN and decrease all the complications with TPN (IV food). It may or may not last but we are certainly going to keep trying. The risks of being on TPN fulltime longterm are far too great. So I am hoping to keep his gut moving.

Also got his official IEP homeschool plan in. Lets just say it is worse then I remember it to be. Basically a joke.


More good news. It's going to be a great Mother's Day. We are going to the Red Sox. Wooohooo. Going to enjoy all this good news while I can.

Hope everyone is well. Thanks for reading.

Monday, May 4, 2009

Update on the past week, WARNING LONG POST

The pictures below are of Avery's party on Sunday. Isaiah was not feeling good during the party, poor thing. We spent most of the day on Sat. at opening day of softball which was fun. Janessa had a blast and she got a nice RBI, really cute to watch. Also the group of women that are surrounding Avery is the Early Intervention team that we will so dearly miss. Since Avery is a three yr. old he is now in the school system, UGH :( totally sucks, tell you more about that in a minute. But we will really miss the group, they were so awesome with Avery.
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We ended up getting discharged from the hospital on Friday afteroon which was great. After Avery's whole episode which sent us to ICP he was fine respiratory wise but did not urinate for over 20 hrs. which was concerning. He finally did after IV fluids. Just weird b/c he was on his TPN and gets plenty of fluids in that. Another development was the he is close to developing gallstones. Yup. Never thought I would be worrying about that with my 3 yr. old but it is due to the fat in his TPN. So he is on a med to hopefully prevent them from forming.

I guess based on how he did not last on the regular floor, something we have not done for over a yr. and I see why now. He will just be going to ICP from now on. They know him so well there. It was a bit of a running joke as to how on ended up on the regular floor. Here is a laugh for ya. While he was on the floor and yes I was in the room sleeping with him. He was crying at 5am (very usual for him) his nurse called the nurse on ICP to ask what she should do with Avery b/c she already had given him pain meds. Crazy. Just another sign that Avery needs to be where people know him best. It almost becomes like your second family, sadly enough.

Everyone was so pleased with how good him did look b/c he gained about 2lbs. Woooohooo. Also shows how well cared for he is which is always good to hear. Makes all the hard work worth it when you see that he looks good given the prognosis of his disease.

Also, I, yes me, may have found the mutuation to their disease. Not sure if I posted before on this but I found an article with fit my boys to a tee and sent it to my neuro for which absolutely nothing was done. But I saw genetics on Friday and mentioned it and they said it could absolutely fit them. So they ordered the bloodwork and we should know by 3 mos. Now this will not help the boys in any way as we just basically treat the symptoms but it does help Janessa's future so she does not have to go through the same thing. Fingers crossed.

Okay the school thing (told you this would be long :) We got Avery's plan proposed by the school for home services. Physical therapy 2x per month, speech 2x per month , OT I think 1x per month, deaf educator 1x per month and educator 2x per week. Yup, as I am listening with this with my eyes bulging out of my head. Why bother even sending anybody to my house b/c that is a waste of time. What happen to NO CHILD BEING LEFT BEHIND. So of course this is NOT going to ride with us. Unbelieveable and yet so exhausting that everything is such a fight.

Hopefully you have lasted this long reading my update. Isaiah is hanging in there but we really need to get a good plan in place for him. Poor kid keeps taking a back seat to Avery who is always in the hospital. I keep having to cancel appts. for him b/c Mr. Avery is in the hospital. I have alot of up and coming appts for Zay and hope to get him feeling better all the time.

I guess that is it for now. Thanks for checking up on us.

More pictures









I think I confused everyone with the picture from Sat. That was actually Avery's 1st birthday. These are from yesterday. You can see how big he has gotten. Isaiah was not feeling good so he is missing from the pictures, poor kid.

Saturday, May 2, 2009

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