Sunday, May 31, 2009

Josh's surgery...

Just a quick post to let everyone know that Josh is home and doing good. He made it through the surgery well and other than a bit of nausea, pain and stuff like that, he is happy and smiling!

If you want to know the details or see some pictures, come visit my family blog. Thanks to everyone for caring!!

Thursday, May 28, 2009

Wish us luck!

We are taking Josh to PCMC tomorrow to have his G-tube placed and some biopsy's done. It's his first overnight stay in the hospital since the NICU. So it could prove to be very interesting.

His chronic constipation issue has finally gotten to the point of medications no longer helping. So a surgeon is coming in with our GI doctor to do a full thickness biopsy of his colon. We'll see if we get some answers between that and hsi upper GI Endoscopy and biopsy's there as well.

So we hope to leave the hospital saturday with more answers. It's worth a shot, righ?

Sunday, May 24, 2009

Clay Crisis

Hi Moms, it certainly has been quite a long while. My computer processor died several weeks ago and then a week ago tonight we had crisis with Clay. Early on Monday morning, Clay entered into a risky abdominal explore that lasted almost four hours. He had a very rare bowel obstruction. They removed about 10 or so inches of digestive tract between the large and small colons and removed his appendix. He was in Surgical / Trauma Intensive Care until late Friday night. He is now in a Surgical Step down Unit and making strides. Only by the grace and mercy of God have we all survived. He has a total mid line incision from breast bone to pubic bone requiring 38 staples. The plus this time of having CP is that the uncontrolled movements meant he got over the soreness the rest of us would have gotten so frozen and stiff over because of the insult to the abdominal muscles. The incision looks amazing......I certainly did not heal near that fast, nor nice after my surgery last summer. His lungs were a big compromise from the long anesthesia and being flat/non ambulatory after surgery. He is still on supplemental oxygen, though less each day and not requiring nearly the deep suctioning that was required all last week. Needless to say, this was a horrific experience to endure for him. His little nasal passages and throat are very inflamed from the constancy of having to pass tubes down for the deep suctioning. His gut finally kicked back in today with two blasts of poops, but that is definitely something that was being waited upon and needed for progress. The stay has required wrist restraints at all times because of the CP and extreme random movements. He kept sliding down in the bed with legs always spilling over and out, wearing a pressure sore on his tail bone because of all the friction. If things continue to progress as we have been so answered by prayer, he will possibly move to a regular room in the next day or two. Quite possibly without further unwanted surprises, we may even be blessed to get him home around mid week, dare I dream. He is so desperate to get back home, to his queen water-bed especially with plenty of wiggle room and no slamming of body parts as in a normal sized hospital bed. There is a referral to have OT and PT consult, maybe tomorrow or Tuesday which might just be the exact thing we need to get those justifications for a new wheelchair. We've been very interested in the ones that come to a stand from a sitting position with the push of a button. He could even drive in a stand position. This will benefit because of the weight bearing, but also, importantly now, help with digestive processes that had grown lax and slow. I hope all of you are okay. I've not had opportunity to check in and read for weeks, but please know I have thought of all of you quite often, wondering if all was least mostly well. Take care and hug your babies. Clay's 24th birthday was Tuesday and never would we have imagined he would be recovering from / surviving such a horrific emergency. Proves once again that Clay indeed still has a very important mission on this earth's journey that continues in progress.
(Please keep my parents in dad is in congestive heart failure and could pass away very soon or up to maybe 6 months. We've elected at 88 to allow God the decision to call him home and when......)

Saturday, May 23, 2009

Speech Woes

Speech is such an ugly word in this house. It has been mentioned many times how badly we want to communicate with our child. It has been a source of contention many times between me and others. Its hard to explain what happens.

Tyler signs many words and usually we (meaning me and his dad) can understand what he wants. We got him to finally sign dad after he USE to say it. He now will only sign it. We have a handful of other signs/gestures that we know mean certain things. Once we explain them to others they can understand him.

When we started school we thought that being around other kids would help with his speech problem. That it would encourage him to be more vocal. While we heard more sounds and a little bit of animal sounds no words came out of his mouth.

We increased his speech and did private and are still doing private therapy. I take him once a week for an hour. Because of his need for being around mom we have transitioned him to being with just his speech teacher.

In February when we got his shunt replaced I called to talk to his teachers and therapists at school wondering why no one noticed he acted off there. For the first time in six months we found out that he was not making any sounds or making any progress with his speech teacher at school.

This was when the speech teacher mentioned he was snotty and wouldn't participate. I kinda of laughed and said " He is three. What do you expect." But I got mad. I sent a notebook every day and rarely got back any kind of feedback. I assumed he was doing fine. Communication came only when I asked questions. So this information was new to me.

I immediately sat down and went through books, puzzles, toys, anything that generated some sort of response from Tyler. I wrote out a long letter explaining noises, sounds, gestures and anything that he did when looking at certain objects.

The first day after that I got a response from his teacher. She said "Wow, we had no idea he would be this verbal." I thought for six months you got nothing and it didn't dawn on you to come and talk to me or call. I would have come in and helped you.

I was furious. But that hasn't really increased our speaking. When we got a failed hearing test everyone ( meaning teachers and therapist at school) thought this was the answer to his speech problem. Me and his dad rolled our eyes thinking that this kid can hear just fine. And sure enough we were right. Nothing was wrong with his hearing. He had his ABR done and not one bit of hearing loss at all.

This is were I started hearing from people " oh that is how my kid was/is" or " have you tried this" or my favorite " I am sure he says more than you think." Um nope. He really doesn't. In fact he makes more noises and sounds for me than he does for any one else. Not kidding. None of those things are comforting when you are dealing with a almost 4 year old. At some point communication is crucial. Speaking is needed to get your point across and to eliminate some kind of frustration.

We have been working on getting the beginning syllables out of his mouth. His private speech lady is trying so hard to get ba ba and da da out. All day long we have done something with speech. Him touching our mouths. Him feeling our throats. Me repeating and repeating ba ba ba.

After his bath tonight a most glorious sound. Ba ba

Cheers and clapping and excitement came. He did it again and again. Looking for praise. Clapping and cheering continued.

This speech thing is exhausting. It is a lonely world. Not just for me. But I can't imagine the loneliness he is feeling not being able to express himself and have us understand.



One word

Friday, May 22, 2009


Marshall no longer qualifies for Special Ed. We lost that battle. We'll see how he does in a regular pre-school. Maybe it's just all in my head anyway. I must have imagined that my son has to be on an anti-psychotic and an anxiety med to control his anger and lots of Clonidine so he can sleep. I'm done. There's nothing wrong with my child. I guess I don't belong here anymore either.

Thursday, May 21, 2009

Teacher Gifts

At the end of the school year, I usually try to do something nice for the teacher. Really there is no way to adequately say "thank you" for all they've done for my children but I hope the effort is worth something anyway. For my 5th grader's teacher I have a fun idea but for my special needs preschooler... I just don't know.

Crew has an awesome preschool teacher and then there is the aide.... the bus driver, the bus drivers aide, the school's PT, the OT, the speech pathologist, the vision consultant, the audiologist.... they are all quite instrumental in our lives. I mean really, where does it stop? I want to do something really nice for the teacher and I want to recognize the others but don't want to break the bank either.

Any idea? Do you give gifts and if so, to whom?

Monday, May 18, 2009


I am looking for some advice. Since the last post I did about Josh, we finally have a plan for him. I talked about a possible Nissan procedure as well as G-tube placement. His Dr. has decided that she doesn't want to wait 6-8 weeks for him to get the Nissan done, so we are just going with the G-tube for now. His reflux was much worse with his NG tube in, so once that is gone and a change in meds, we hope things will be OK.

So... now I am looking for any advice or help on G-tubes. Anything you have found to do or not to do. What type of clothing is the best? He is going to turn 2 on June 1st, so I have been wondering if he needs to wear onesies or not. I would assume he needs to have his tube covered, but I don't know a thing. Also, does anyone know how long of a hospital stay it requires? I am STILL waiting on the Hospital to call with his surgery date, but I am trying to decide what kind of arrangements I will need.

So please feel free to give me any or all advice you have... it would be very much appreciated!!

Thursday, May 14, 2009

Jonah's Diagnosis

Jonah had a very successful trip to Denver Childrens hospital. We met with some of the best, and feel very fortunate to have done so. His diagnosis, Bronchiectasis. This was a shock to the doctors as well to my husband and I. I have read as much as I could on it but I still have questions that books and internet surfing can't provide. If your child has this or if you know of someone who does please let me know. I have a lot of questions about quality of life and so on. He just has the Bronchiectasis he does not have Cystic Fibrosis. Thank you all!

Wednesday, May 13, 2009

Processing so much info at one time...

I feel like this week has been a major information overload. You all know how that goes. I started out the busy week not really thinking much of what was going on for my family and just trying to remember who had what going on what day. You know how that goes. So here it is... only wednesday and I feel like I have have been a little blind-sided. Don't get me wrong, we didn't have anything horrible happen, but when you think you know how things are going and then it goes a different direction, it takes you a while to process.

So the week started out with an upper GI test at Primary's for my little Josh. They are going to put in a G tube since his NG tube is causing all sorts of fun problems. While there for the test, I happened to have a wonderful radiologist doing his test. He explained everything going on through the test and what he was seeing. I was just assuming everything would come back completely normal. So he starts talking about how much reflux he is seeing and asking how well Josh tolerates feedings. I told him his history and he is still on meds. He tells me then that Josh was refluxing every single time he did whatever thing he was doing. So he pulls the NG tube out of his stomach area and continues on. Now he refluxes half the time. When I was leaving I remember thinking.. "OK, so his reflux is NOT gone and is worse than I thought." Then tuesday rolls around and the Dietician through the Feeding Clinic at Primary's calls me with some results. She tells me that Dr. O'Gorman (the GI dr) will have to look at his results still, but she thinks that as well as placing the G tube, Josh will need the Nissan (sorry if I am mispelling it) procedure done as well. She tells me that instead of what we thought was going to be an outpatient procedure, will have to be an inpatient surgery if they go forward with that. With all that I have going on with just Josh alone, a hospital stay was not in my plans. I was totally caught off gaurd with that.

Then today comes and we go back down to PCMC for an appt with his neurologist. There wasn't any earthshattering news there, but sometimes it's hard to hear everything negative at once. The Dr. is amazing and I love how he is compasionate about Josh, but yet tells me straightforward how it is. We know he has Sensory Integration Disorder, Dyspraxia, Apraxia of Speech, all his feeding problems... the list goes on. But he told me that we are not realizing the effect that microcephaly plays in all this. Microcephaly is the root problem and everything stems from that. So we can't just assume that he is like other kids with SID. It kind of compounds the problem a bit. He just told me that we can't expect a time that Josh will 'catch up' to his age. We need to remember that although he is making progress and will continue... there is no cure and there is no magic 'getting better'. None of this is a surprise, we already knew that. But I think with all that is going on with Josh lately, I haven't really stepped back and thought about the big picture. Some times I look at other kids his age and think... will be so great when Josh is just like them. And I have to remind myself that he is going to be who HE is, and that is OK. Some days this can all be so overwhelming and you have to remember to take it one day at a time. I just seemed to have forgotten that lately and was trying to live in fast forward mode I think.

I think that as parents of special needs kids we walk a fine line of wanting our kids to be completely normal and accepted and realizing they are different. It's a daily battle that I don't think ever gets easier, just more easy to deal with (in a way). I have had to really remind myself of these things and keep on going.

Tuesday, May 12, 2009

Better Day

Today was better. I didn't have to babysit anyone so it was just me and my 2 boys. I kept Nate (my 10 yr old son) from school because he's been coughing SO BAD and it's exhausting. I just sent him for the last hour so he wouldn't miss the mandatory testing at school. Anyway, we went to the doctor and discussed what's going on. Marshall has been getting more and more violent lately. Yesterday, he didn't want to get in his car seat so he climbed over the seats and was hiding in the back of the van. Well, he thought he was hiding but it was obvious where he was. I tried asking him to come back and get in his car seat. I explained that the police men say all little kids who are smaller than 8 yrs old have to be in a car seat. Nothing worked. So finally I went back there and got him. As I tried to put him in his car seat, he got very angry at me. He arched his back and refused to get in. I put him back in and he got out again before I could buckle him. As I continued to struggle with him, he started punching me in the face. I was finally able to get him buckled and get him home but it was so bad. Thankfully, I have a very understanding friend and she came over to talk to me last night. It was a very very rough day.

I'm so glad today was better. I still have a million things to do that haven't been done yet but I'll get to those. The main thing is, Marshall only tried biting and hitting me a few times. Maybe that's because when we're at home without a set schedule, he can usually do the things he wants to do (within reason of course). Today he got to play Toontown which is a major obsession for him. I don't see any harm in surviving. Even if it means he played Toontown most of the afternoon. You do what you gotta do.

Sunday, May 10, 2009

How Can I Do This??!

My husband just left today for a week-long research conference in Spain. He hated to leave but he really needs to go there. This should get him some recognition, which will be very much needed next year when he graduates (he's finishing up a PhD in Theoretical Astrophysics). So I haven't even been alone ONE DAY and I'm fighting tears. I'm so frustrated and overwhelmed and I only have 2 kids!!! Marshall is defiant and angry but he's doing it a lot more passively these days. He does mean and naughty things on purpose and doesn't care about the consequence. I don't get even ONE MINUTE to myself before he does something bad. I try playing with him but he won't stay focused on anything for more than 30 seconds (IF THAT).

Earlier today he kept jumping on the couch. Not only do I not want him to do this because it can ruin the couch, he could fall and hurt himself. He purposely sits on the back of the couch by the banister that separates our living room from the stairway (we live in a duplex but we have the top floor). I try to get him to listen so he won't get hurt but he won't listen. Then he started kicking his brother just for the heck of it. So, I grabbed his leg and wouldn't let him have it back. I just held his leg while ignoring him, and went about my business. He started kicking me with his other leg and laughing. So, I took him on my lap and put him in what I call a "lockdown timeout". At first I only locked down his arms but then he started kicking me. So I put my legs over his legs. I didn't need to put pressure on him at all because I was just using my legs to block him. Next he tried to bite me so I had to immobilize his head. He was telling me he's stronger than me and he can get away. He almost did get away because I had just finished putting lotion on my hands.

He has a sinus infection right now, although the doctor won't give him antibiotics for it now because it hasn't been enough days. Maybe he's not feeling well so he's acting worse. I know he's tired and he's upset that Daddy is not here. We also just got back from a week vacation to Chicago (we drove 24 hrs each way..ugh). He kept hitting me last week because I wouldn't let him continue to run away during church. I took him out to the foyer because he couldn't behave but he kept trying to hurt me even more. If he hits me and I tell him it didn't hurt, he just hits harder. What am I going to do? How will I make it through this week? It's not like it's any easier when my husband is here because he has a shorter fuse than I do. Things are not going well here.

What makes it worse is that last week when we were in Chicago visiting friends, I was told by many people that he acts like a normal 4 yr old. We stayed with a family for 4 days. There are five children in that family, the oldest of which is 8 yrs old. She (the mother) said he is a really good boy and he doesn't seem to have any problems at all. He's a normal 4 yr old boy. Why do I hate hearing that so much? Why does it make me 2nd guess myself a billion times over? I feel like I'm crazy for thinking he has problems but I know he does. I spend way too much time trying to explain why I say he has problems or why I think he has Autism. I WISH he didn't have problems but it doesn't change anything.

What's a Mom to do? Take it a minute at a time...keep going...because I have to and because as frustrated and upset as I am, I love this child more than anything.

Wednesday, May 6, 2009

Hello Everybody,
It's been a long while since I've posted anything, and today is probably not the day I should break that streak. I am so tired today. Mentally, emotionally tired. exhausted is a better word. We've dealt with a lot of big stuff lately. -non tulip related. but never the less, big stuff. I am worn out and ornery and all my patience and understanding is gone. I'm in 'one of those moods'.
A member of our family - with good intentions- excitedly told me about a special needs play that she and her husband had been to. As they say it: his cousin "is.....(awkward pause)....special needs." This cousin is much older than they are and I don't believe that they know what his issues are. They proceeded to describe how 'special' the whole performance was and how they just cried. I'm chalking it up to my mood, but it really bothered me the way they talked about this special cousin. There was something condescending about it. Does anyone know what I mean? sort of like they don't really get it, but they know how they're supposed to act about it. Like they don't really even know their cousin, but will go watch him because they are such good people. I had a hard time listening to them. And while I understood perfectly why they brought it up with me, I still kept wondering in the back of my head "Why are you telling me this?"

Several days later, I was tending a neighbor girl. M.K. happened to be home from school that day. This girl usually plays with A, not M.K. but, they wanted to play on our new Wii fit. while I was trying to help M.K. get situated, this girl says, "I bet M.K. can't even do that." I didn't think much of it and calmly told her that M.K. can do some things with help. The little girl was speaking totally innocently as any child would. She said "Remember the other day when I saw you at my school, and there was a boy with me? Well, I told him that M.K. can't walk because she's handicapped, and that I feel sad for her. He said he felt sad for her too." I know she's just a child. I know she's being sincere and probably just repeating what she's heard from other grown ups. but I hated it. I just hated hearing that. I told her that M.K. can do lots of things and that she's even learning to walk, and that she's very happy - there's no need for anyone to feel sad for her....I was angry. I still kind of am.
I hear things like this fairly regularly. Most the time I don't care. They don't bother me. People just don't get. I don't expect them to. But sometimes I go through phases, or get in moods or something where those kinds of comments really bother me. Sometimes, I just don't like other people. Do any of you get like that?
I know I'll get over it like I always do. Then I'll feel bad for thinking so rudely about all the people with good intentions. but I'm not perfect. I still have the moments where I'm just a brat about it all. Can anyone else relate?

Sunday, May 3, 2009

And we're Off

wish me luck ladies. Tomorrow morning we fly out to Colorado for all of Jonah's testing to start. I pray that I will be returning home to SLC with a son who is well on his way with a new treatment plan. I am feeling very nervous and excited. This is not a good combination of feelings. It may lead to vomiting! sorry, TMI i know. Anyways if you could just keep little Jonah in your thoughts and prayers I would be so grateful! I will try to keep things posted on my personal blog, if you want to follow along. Thank you!!!