Physical therapy evaluation

The lady from First Steps, Kate, came tonight to do a physical therapy evaluation on Z. She did lots of tests and it made me aware of how delayed he is in gross motor skills. Fine motor might be a bit behind as well.

After her assesment she said he definetely has low muscle tone (that is an NS symptom/characteristic/side effect) and she said he was really working hard to use his upper body muscles. She also said she thinks he has some sensory issues. Since this was just the initial evaluation, I have to wait for her to contact our "case worker" and then we will work out a plan for him. I didn't ask but I assumed this meant that he qualified for PT under the MO First steps Program. I think they will then determine what the insurance will cover and what our costs will be. We should hear from her in a few days.

I am just always amazed by the different things these "experts" show me. She gave us lots of exercises to do. She showed me how Z won't even twist at the waist to reach for something on his side, he just uses his arms.

Even though I expected this and deep down (not even that deep down) I knew Z was really delayed, it still left me a little sad to hear an expert say he did have low muscle tone and was delayed. I don't understand why it upset me and broke my heart for him, yet again. If this is the worst thing he has to deal with, the worst complication of his NS, he is not that bad off. I just look at my teeny tiny little boy and don't want him to go through any more than he already has. It isn't fair. Z doesn't know he is delayed, he is happy and silly, just like a baby should be. If it doesn't bother him then why should it bother me?

It's okay because I am going to get him all the help he needs to be the best he can be...he deserves that and so much more.

Returning to our chaotic life

We had a good time in FL. The boys did well on the flights and enjoyed the beach. Zachary ran a fever the entire time we were there and threw up his antibiotic once in a while. I can't wait to have his tubes in his ears. He needs some relief.

Dad and Jason caught some sharks (of some sort) and we ate them for dinner. Not too bad! It was strange not having mom there but 2 of my aunts came over to visit a bit and it was nice to have them there. The weather was gorgeous but the no-see-ums were awful! I always thought my mom made those things up but then I saw on one of the cartoons that JD watches that they DO exist! They are nasty little boogers that like to bite you! Next year, we bring bug spray!

I can't find my camera right now (GRRRR) and once I do I will post some pics.

Today is my last day of working at preschool...thank goodness! Then Wednesday we have the physical therapist from MO First Steps coming out to evaluate Zachary. Thursday we go check out a preschool that I want Jonathan to go to. He is very excited to see it. I hope it works out.

On May 11th we take Z to Cardinal Glennon for his second ENT appointment. I am hoping we can get some answers and quick relief for Z. He is tugging at his ears again and I'm not sure where to go from here. I hate keeping him on antibiotics but he may need them until they get tubes in his ears. I guess I'll have to call Dr. Kate if he runs a fever any more. Poor guy.

A little boy named Jack is having surgery today to have a feeding "button" put in his tummy. Please think of Jack and his family today and say some prayers that this will help Jack keep his food down and gain weight. Every time I see Jack's sweet face it reminds me of how tiny little Z was at that age. Jack I'm thinking of you and your family today! ((HUGS))

Heading off to Florida!

Finally my family is getting the vacation we all deserve! We are off to sunny FL for some R&R with my dad and to bring him home!!! The boys are doing well and I think Z is feeling better...he is less whiney! LOL Jonathan is VERY excited!

My sister is having her gallbladder removed on Monday, please keep her in your prayers. I'm thinking of you Sandy and will be calling to check on you.

It seems my sisters are getting surgeries left and right...settle down ladies! Tammy is recovering well and I wanted to thank all my friends for their prayers for her.

One of my friends just found out she is pregnant, she has had 2 miscarriages so M, congrats sweetie...I am praying for you and your little bean!!!

Another friend's husband is being deployed in a few days...L I pray for H's safety. I also pray for your sanity. :-) You will do fine with the kids but I am thinking of you.

Take care everyone and have a great week. Wish us luck on the flights...or at least that those around us don't get too irritated. As Dr. Kate told me, screw em! We have just as much of a right to be on that plane as they do!

I might sign on and share some pics from the beach...curious to see how Z does with the sand.

Later!

Lots of answers

Today was a whirlwind...completely exhausting. Sunday Z had a fever between 101-102 all day. He has been super whiney and still snotty and congested...I've accepted the snot and congestion as who Z is. The whiney part, God help us all if that is who he is. :-) We managed to have a low key Easter. The Bunny hid eggs but no one was inclined to look for them. The boys got lots of beach stuff from Grandma and Grandpa (thank you!) and the Bunny got them beach towels, sunscreen and some new toys to take on the plane with them. In reality it is more crap we have to pack. I think we will have 3 suitcases and 2 carry ons. Whew, I can already see Jason getting grumpy as we lug all that stuff into the airport with 2 kids in tow. Fun times! I'll be stressed and Jason will be grumpy but in the end, it will all be fine and dandy.

This morning I got the kids ready and was in the bathroom and knocked over several of Jason's razors. I swore I picked them all up. 10 minutes later Z is outside the bathroom door and I realize I hear him sucking on something. He has a razor! I gently ask for it and he gladly hands it over. I scoop him up and see no damage but did find a wee bit of blood in his mouth...nothing major. So we take JD to school, head to the ENT arriving 15 min early as they asked us too. I'm glad they told us 15 minutes early because my time is so less valuable than theirs and I was forced to sit in the waiting room from 915 until 1045. Nice! Z was antsy but all in all happily charming everyone he came in contact with. He loves getting people's attention. Once we met w/the doc we gave him the LONG history of Z and focused on the last 6 months and how sick he has been with coughs/colds and crap. He looked in his ears (Z politely turned his head when he saw the little instrument), checked his nose and then this throat (Z again obliged when he saw the stick and opened his mouth) and said he has fluid, large tonsils touching and swollen lymph nodes (not much new there). I was shocked by the tonsils. He said due to his history and age, he would rather the go to Cardinal Glennon as the hospitals he goes to do not have a pediatric unit. He said he thinks Z has sleep apnea...what?! I told him how he doesn't sleep for more than a good 3 hour period, he snores so freaking loud and is so restless. He said it could be the fluid but he really suspects it is sleep apnea. I told him how he would stop breathing for a second or 2 at night and cry and move around. On May 11 we will go to Glennon to meet the pediatric ENT there. We will look into a sleep study and possible removal of adenoids, tonsils and then tubes put in. If they don't feel he needs adenoids and tonsils out (due to his age) then he can do the tubes b/c he does for sure need them.

I asked about our flight and if he should go and he said "In a perfect world we wouldn't suggest him flying but this world isn't perfect so go and have fun!". I like this man!

Because I was so frazzled I didn't think to ask for an RX so I called Dr. Kate. The receptionist said, "Oh we were just talking about you and said it had been about 2 weeks since you were here. we were hoping Zachary was doing good...sorry we jinxed you!". They got us right in and Dr. Kate agreed his throat was very red and since we were traveling she wanted to give him an RX (God bless that woman). She is also working on his First Steps paper work and asked if I would be willing to get him OT even if he is not approved. Of course I agreed.

Tomorrow: Jonathan's Parent/Teacher Conference

Oh and b/c this appt took so long I was late picking up Jonathan...last kid at school! And he teacher asked me if the baby was ok b/c Jonathan told her he got hurt this morning and was bleeding! The little turkey ratted me out!

Sorry for yet again, another LONG update. As one of my friends said, "at least you are really getting answers!" and yes we are!!! So as exhausting as this is, I need to focus on that...and our trip!!!

I suppose that's good news!

Today we had our interview with MO First Steps. I learned something that I wasn't aware of...it isn't a free program. No that is not a big deal but what got me was she told me it use to be free. Gee, I wonder why it no longer is? Hmmm, I am sure it is due to the former Governor. Whatever!

Anyway, this interview was to determine if Zachary qualifies for an evaluation. After an hour of questions she basically told me she doubted he would qualify without Medical intervention. She said she was very impressed with Z's verbal skills, understanding of what I say and his fine motor skills. She said she understands my concerns due to his previous issues but from what she could tell, he was rather advanced. Now you know at this point I was ready to crawl under the table...I made a big stink for nothing!!! But she did say that what they can do is get medical information from his doctor's and then maybe he can be evaluated for just physical therapy. But we'd still have to pay a monthly fee. Now that is fine because if he isn't walking by 18 months then I will be taking him to PT per his pediatrician but the nice thing about first steps is they would come to my home and yes, the fee would be cheaper. Oh well, we'll get little man whatever he needs.

The more we talked the more I realized the stuff he can do and how in tune he is w/his surrondings and how he does interact with us so well. I truly think that he is just not walking b/c he isn't confident enough and truly not interested. The one time I make a big fuss (ok well not the only time) it wasn't necessary. Doh!

Tomorrow we go to the ENT and discuss his ears. I am prepared to hear that he needs tubes but I am more curious to see if he still has fluid in them now as he was running a fever yesterday. I just want him to have a break from being sick b/c you know, when he is sick he whines all.the.time!

We also have Jonathan's parent teacher conference on Wednesday and she said she was very eager to meet with us b/c she thinks Jonathan is such a great kid. He's a charmer!!!

I'll try to update before we leave for FL! Yay!

Don't Poke Mama Bear

Some people talk about this protective mode that mother's go into and compare it to that of a Mother Bear. We will do anything to protect your children so please, don't poke Mama Bear.

This Mama Bear has been through quite a bit w/her young cub and was wondering who she would lash out at. Well after much consideration and time to let things dwell in my mind, Mama Bear decided to take it out the woman at Missouri First Steps (MO's Early Intervention Program). You see back in January when the geneticist diagnosed Z with NS she also put in a call to First Step's to get Zachary qualified or at least an evaluation. When this woman called me back and we had a 10 minute phone conversation she then decided that Zachary did not qualify for FS. She didn't know what NS was and didn't offer to send someone to our house for an interview but did wish us well and said he just wasn't delayed enough and if he fell further behind then to feel free to call them back.

I took her words as the end of this quest. Never thought more of her turning us down but kept pondering the fact that she didn't offer to look into what NS was nor did she offer us a meeting. She just dismissed my son, my son who has had a very rough go of it, like he was nothing. This is what bugged me and ate at me. Finally I spoke up. In the past week I mentioned this to Dr. Kate, to the genetics nurse and to our parents as teacher representative. All of them were furious at how easily Z was dismissed. They woke up Mama Bear and made her realize some twit was messing w/her child. This twit sent me a letter and some information on therapy places that were over 30 miles from my home...excuse me? I was so mad that in my fury and disappointment, yet again in the state of MO, I threw out all those papers so I don't know the twit's name...probably better for her.

Well last night I got online and I went to the first steps site and read how each family is entitled to an at home interview. Say what? Well those words hit mama bear and sent her over the edge. I wrote a long email to MO FS's and told them how this twit dismissed my son. I told them how hard he fought for his life and how yes he is delayed and it may not be the 50% they required but they owed it to my son to evaluate him and that the twit who called me should have said, "Well Mrs. Foster, I am not familiar with NS but let me do some research and learn more about it and then I'll call you back and we can discuss this.". I told them that I hoped all kids in MO were not treated like this and that I was just truly disappointed in this entire program.

At 9am this morning my phone rang. It was a woman, the director, of the St. Louis office of MO First Steps. She apologized for the way we were dismissed and agreed it was handled inappropriately. Wow! I accepted her apology and told her that I didn't even know if Z was truly delayed in gross motor skills or just a bit slow but I did know that kids w/NS have low muscle tone and I needed them to tell me if they felt he was truly delayed. If not, that's fine. I should have my interview set up by the end of this week. Mind you, if Z isn't walking by 18 months then we will be taking this into our own hands and getting him in therapy but if the state is willing to help us, I am going to let them.

As a friend pointed out to me, let's hope the person who interviews us is NOT the same twit I spoke with! Let's also hope this twit learns the errors of her way and does not dismiss any other children so easily. Let's hope she also learns that you do NOT poke the Mama Bear, especially a very tired Mama Bear!!!

All tests are normal!

The nurse from the geneticist office called me to report all of Z's tests were fine. However, we had to go see Dr. Kate on Tuesday for coughs and colds (still) and she said she can't do anything more for Z's fluid in his ears. So we see the ENT on the 14th. I am sure the diagnosis will be tubes since it is common for NS kids and Z has the low set ears. Poor kid. I know tubes are common but it still ticks me off that this kiddo can't catch a break! His cough is horrible and I hope we can go 2 weeks without another trip to Dr. Kate. I just get tired of going there every week and watching the bills come in. AND I just want Z to be healthy...and less cranky! Ha!

Anyway I explained to the nurse how MO First Steps (Early Intervention) denied Z any help and they did it via a phone interview. The nurse was a bit ticked. She said she will call them and get the long form and push for his acceptance. Bless that lovely woman! Not sure if it will work but my goodness I hope so. Z is 16 months and not walking and while I know this can be normal, nothing is ever normal for this kiddo. I want him in therapy b/c of his low muscle tone but I am burning the candle at both ends and would like a bit of help from the state...the therapists would come to our house!!!

Jonathan is thriving and doing good. He has a winter cough and is on some allergy meds to try and help it. He has about 7 weeks of preschool left. I am taking him and picking him up and you know you look rough when the teacher tells me I look exhausted! Ha, if she only knew! We are trying to find him a new full time preschool b/c this taking him and picking him up is very exhausting. Luckily my work is very understanding and are doing all they can to help me out. Now if they allowed nap time that would be even better!!!

We leave for FL on the 18th to visit my Dad and then he will fly home with us on the 24th. Its our first family vacation and as nervous as I am about flying, I am so excited. We all deserve this week at the beach and i can't wait to sit in the sand and watch my kids play and experience the ocean for the first time. I can't wait to see my dad and watch him and the boys play. 17 days and counting...