Sunday, June 23, 2013

Time for an Update!!!!

So lately it's been crazy at our house.  With preschool finishing the week before last I've had my hands full.  Little Man is having a hard time adjusting to not going to school and every morning he's been asking if he's going on the school bus, I always have to tell him no and that soon school will start for him.  He is going to be attending the summer program that starts July 30th for him and will last 3 weeks.

So back in May Precious Butterfly went in for a Brain MRI, to rule out Tuberous Sclerosis and a left frontal lobe abnormality; I can say that the MRI was normal. 

Also the same week Little Man had his overnight EEG, it was an interesting trip for him and me.  Yesterday we got the results of the EEG and I am relieved to say that it was normal and he has not had any seizure activity within the 2 weeks prior to the test nor did he have any during the test.  The doctor did tell us that it doesn't mean that he doesn't have them.  We need to watch for his staring spells and if he has one we need to stand in front of him and take our pointer finger and bring it to touch his nose.  If he reacts that's good, but if he doesn't we have to call the doctor immediately.  I can say with certainty that he doesn't have them that frequently and I just have to watch him closely.

Two days later I went back up for Precious Butterfly's overnight video EEG, unfortunately I don't have the results yet.  We find them out in July.

We've also seen the pediatric ENT for Little Man back at the end of May and he's having surgery next month.  The doctor is going to scope him and if there is an anatomic abnormality he'll fix it, he's also going to check to see if his adenoids have grown back and remove them if necessary.  If he does have a repair to do, we will be spending the night in the PICU (Pediatric Intensive Care Unit) we won't know until he starts the surgery. 

Yesterday we got the results of his blood work too.  Most of it was okay, but due to 2 different chromosomes having duplication mutations we are being referred to a pediatric geneticist to discuss the results form the Mircoarray Analysis.

We also had a lengthy discussion about his behavior and what to watch for.  He gave us lots of ideas for distractions when he gets in a mood.  I also have to create a strict schedule for him because he needs the structure due to the Autism.  He also said as a way of communicating with him is to create a picture book and have him flip through it to tell us what he wants.  So all day yesterday I was searching for pictures and I finally got a free 30-day trial of Board Maker.  I did lots of printing in black-n-white and spent most of last night coloring the pictures and a good chunk of today coloring the pictures I've already printed.  I made a list of pictures I still need to print and I'll be up late tonight finishing his picture book and his schedule (we spend Sundays at my parents' house and my laptop is at home so I can't even print anymore pictures or start creating the book since everything is at home).  We also discussed the school district and his doctor is not pleased with them and their handling of him being Autistic.  He is really angry that they are essentially not communicating with us regarding how they talk to him so we can enforce it (we are having lots of tantrums at home).  They also haven't been very helpful all around I guess because they are refusing to increase the frequency of his attendance due to them finally changing his IEP from developmental delay to Autism, they aren't even offering him additional services that he could probably benefit from.  He also said that an iPad would be good for him since it's been proven to help Autistic kids; we don't have an iPad nor can we afford one.  So thankfully my mom wanted to upgrade her Kindle Fire to the Kindle Fire HD, she's given her Kindle Fire to Little Man to use and I have to get him apps that will help him not only communicate with us, but help avoid tantrums/distract him from something he can't have.  We are hoping that Family Support Services can assist with additional help and possible help us secure an Autism voucher to get an iPad.  If we can't both hubby and I have decided that next year for our tax return we'll each get an iPad not only for ourselves, but also to help eliminate having to need the picture book when we're out and about and we need to communicate with's a lot of stress that I feel at this point because he needs help and I cannot get him all the help that he needs nor can I afford everything that he could benefit from.

Trying to do play dates is not happening due to none of my friends being around nor available.  I've found that I always have to reach out to my friends, none of them ever reach out to me.  It's gotten to the point where I guess it doesn't matter because I have my hands full with both of them and we're still trying to adjust to everything and figure everything out.  I haven't even had a chance to read any of the tool kits from or anything because I am so tired after they go to bed.  I hope to get a chance to read them soon because I cannot keep feeling clueless because I haven't been able to read.  I've joined and talk with other parents that have children with an ASD diagnosis.  I am still trying to get my bearings, but I just can't wrap my head around everything due to not being able to sit at the computer and read/research everything I need.

SO...Precious Butterfly hasn't been herself lately...she's gotten more temperamental lately and I am having a hard time understanding why.  I know that both kids aren't sleeping well so maybe she's just super tired, but it's every single day she has multiple melt-downs that are lasting for over 5 minutes some as long as 10 to 15 minutes's very draining because Little Man is having them too.  Lately she's been thrashing her body (just like him) and I do everything I can to keep them both safe, but man does it hurt when they hurt me.  Her behavior alone makes me think that she might also get an ASD diagnosis...I guess I'll have to wait and see. 

Until next time.  Have a great week!

Friday, April 19, 2013

It's Been a Week...

It's been a week since Little Man was diagnosed...I still feel overwhelmed because I have so many things flying around inside my head. 

On Wednesday we saw his pediatrician.  We went to see if he has a murmur and if we needed to see a pediatric cardiologist.  His doctor heard what is termed as a venous hum; however that's not say that there is a murmur or not.  So we are going to have to go and see the pediatric cardiologist to be certain that everything is okay. 

On Thursday we saw his pediatric GI doctor.  This was just to check in and see where things are in regards to his reflux and constipation.  We also discussed the additional diagnoses that he's received and the results of his swallow study.  We now go back in 12 weeks for another follow-up. 

We finally have an appointment to see the pediatric ENT at the end of May.  I hope that he has some answers for us.  Hopefully he can tell us what will happen and if he'll need surgery to correct it. 

Now as for Precious Butterfly, I haven't forgotten about her.  We actually have more going on with her too.  She was evaluated a week ago by early intervention (EI) and it was discovered that she qualifies for speech therapy both her expressive and receptive speech is approximately around 12 months of age.  So today was her first speech therapy session; luckily we got Little Man's former speech therapist so everyone is comfortable.

During my talks with the child developmental specialist about Little Man I mentioned how Precious Butterfly has had a speech regression and getting her in to see the developmental pediatrician sooner rather than later.  We've been waiting since February for an appointment after she failed the MCHAT at her 18 month check up.  The developmental pediatrician wants to see her during the regression.  Now I have learned from what little research that I've done, that there is a genetic component to Autism, her failing the MCHAT has set off a red flag for possible Autism; we are seeing the developmental pediatrician May 1st I am looking forward to seeing what he has to say about her.

You may be wondering how hubby and I are handling this...well...I can say that it is hard to digest all of his diagnoses, but I am relieved that we finally have answers to what we've been going through with Little Man.  Hubby hasn't fully had it sink in...however, I think that's because he's torn about being with me for the appointments and being at work.  It's pretty much my job to do the research, inform him of what I discover, keep him posted regarding appointments, and answering his questions as best I can.  Luckily my family is being supportive through all of may be wondering about my in-laws, well there's not too much to say.  We informed them a week ago of the diagnoses and all that my father-in-law said was "wow" to each thing we said.  We really haven't spoken with them this week about all the appointments we've got/been to.  I have a feeling either my father-in-law will call hubby tonight or at some point tomorrow.

I hope that as a family we can get through this and adjust accordingly to what each of my babies need.  I plan to post as often as I can, but sometimes I get distracted and don't get to sit down at the computer to post.  I plan on posting at least once a week if not more.

Even though it's Friday, next week is April vacation...that means Little Man will not be going to preschool...let's hope that we have a good week.

Sunday, April 14, 2013

I Didn't Expect This...I'm Overwhelmed

So I'm sure you've read the previous post...Little Man has had a lot happen in the few days.  It's a shock, but we're dealing with it and I'm trying to process it so I can help others understand my unique Little Man. 

He was seen Friday morning for a modified barium swallow at Concord Hospital.  Unfortunately he now requires his liquids to be thickened to honey consistency.  His epiglottis (the flap that flops back and forth between covering the windpipe versus the esophagus, depending on if you're breathing or eating) is anatomically incorrect/abnormal.  I don't know the specifics or the specific diagnosis for it, but now we're waiting for a referral for a Pediatric ENT.  The feeding and swallowing specialist for the SMS (Special Medical Services) told me that she'll be coming over in a couple of weeks to go over the DVD video from the visit and explain things to me.  She also will get a written report to me at some point in the next week.  The prescription for the thickener was sent, but unfortunately nobody can fill it and by the time I was notified, it was too late.  I've called every pharmacy in the area and they can't fill it.  So Monday morning I have to call one more and ask for it to be special ordered, in the mean time I have to thicken his drinks by using applesauce.  The ratio is 4oz of juice to 8oz of applesauce roughly, I just add applesauce until it roughly appears to be as thick as honey.  This alone has been difficult.  We have a follow-up visit with the Pediatric GI Thursday to discuss the results of the study and where we go from here.

Then to top it off, Friday afternoon we took a trip to the CHaD Child Development Center.  We got shocking news and a diagnosis.  Little Man has been diagnosed with an Autism Spectrum Disorder (ASD), hypotonicity, and transient alteration of awareness.  It came as a shock...even more shocking the doctor heard a murmur and we have to see his pediatrician for a follow-up to it and see if we need a referral to see a Pediatric Cardiologist.  We also will be having an overnight visit at CHaD for a prolonged video EEG to see if he has seizures/to rule out epilepsy (apparently children who are autistic have a higher risk of epilepsy); Little Man has these staring spells and that's why he's been diagnosed with the transient alteration of awareness (he actually had one during the visit with the doctor).  After the electrodes are removed, they'll do a blood draw and check him for a few other things.  As for the murmur, it could be indicative of a vascular ring or sling and they need to be ruled out.

I think about Little Man and his diagnosis along with the other things that he has and it just brings tears to my eyes.  I know that I need a good cry to help cope, but I just don't have anyone that understands what I'm going through.  My friends don't know and frankly talking with them isn't really an option.  Then there's my family, I know they mean well and all, but they don't understand how I feel and what is happening.  In my mind he's still my little boy and will always be my little boy, however, I can't help but wonder why this is happening to him and to us.  My in-laws, however, appear to be stunned/shocked by this diagnosis and don't really know what to say.  I have a strange feeling that I will be answering and doing a lot of explaining to them so they understand it.  

I have a friend from church, well actually a former classmate's mother is a friend of my parents and someone I consider to be my friend.  She knows what I am going through and is there for me.  She's offering to help me learn to best advocate for Little Man and provide some additional resources/contacts to help be sure I do all that I can for Little Man.

Then my Saturday didn't start out as I would've liked...Little Man was up at 6:45AM screaming and crying...he was pointing to his throat and saying "boo-boo."  I told him that as soon as the doctor's office opened I'd call and see if they could see him.  Well I called and informed them that he was complaining his throat hurt; they got him in pretty quickly and during the exam the doctor asked me if his ears were bothering him...come to find out the rapid strep test was negative and they were culturing it too.  Then the doctor did send a prescription for amoxicillin to the pharmacy, I had no idea why so I asked and the doctor informed me that he had an ear infection.  So I'm just a tad bit on the tired side due to lack of sleep. 

Saturday, April 13, 2013

Time to get caught up...

So I know I haven't blogged in a while, but things have been super crazy and frankly I haven't had the time...between my kids and reading books I just haven't had the time nor the energy to hop on the computer and post.

Christmas was crazy, but when isn't it?  The kids had a good Christmas and enjoyed being with family.  Even though we see everyone pretty regularly we still enjoyed spending Christmas together.  Both hubby and I enjoyed seeing the kids open gifts from everyone.

Then back in February Little Man celebrated his third birthday!  It was a small intimate gathering with family and a few friends.  We actually hosted it at our home rather than my parents' place.  Little Man had a good time; he chose Cars for the theme and for his cake. 

Easter was pleasant.  Instead of my parents hosting a dinner, we went out for breakfast as a family and I hosted an Easter dinner for my in-laws.  I went with a ham shank, green bean casserole, steamed corn, and roasted red potatoes.  Everything, but the green bean casserole were safe for Precious Butterfly.  Everyone had a good time and the kids got baskets filled with different goodies.

That's pretty much what's been going on since the last post.  There are more things to discuss that have occurred in the last 24 hours, but I'll save it for the next post. 

Wednesday, December 12, 2012

Let the Cookies Bake!

Today Little Man and I  made our first batch of cookies!  We made Snickerdoodles!  We had a little spill in the beginning, but it was fun.  After I assisted him in pouring all the ingredients into my mom's Kitchen Aid Mixer instead of locking it (it's the only switch he's allowed to touch) he turned on the mixer and some of the dry ingredients went all over the table.

I thought it was funny and he was shocked by it.  Right now he's napping and I'm planning on making the dough for more cookies and that way he can help me tomorrow make them.  I also want to make some brownies that are safe for Precious Butterfly.  I'm still deciding on how I'll make them and which ingredients I'll use so that it's safe for her.

This year we are planning on giving cookies to some of our neighbors just because they are so nice, especially the older couple that live below us.  They love hearing the kids run around and the occasional bangs from falls and stuff being dropped.  They say it reminds them of being at home; they even invited us down to their place for hot chocolate sometime.  I think once we're done baking all the different cookies, we'll be giving them some.

So that was today's adventure for baking so far...until tomorrow!

Monday, December 10, 2012

Christmas is on it's Way!

Unfortunately a cold virus has hit our home and I am the last one to get it.  I am hoping to feel better within the next day or a result I haven't been doing much with the kids.  When they don't feel well, it's hard to get anything done.  Now that Little Man is feeling much better we can continue with projects and baking!  I've borrowed my mom's Kitchen Aid Mixer.  I don't have my own and to mix the batters with the hand mixer or even by hand is too much work and it prevents Little Man from participating.  Tomorrow starts the baking in this house.  We've got a lot to bake and only this week to do it, that is for the cookies.

Now what to make, well, that's easy.  I plan on doing the traditional cut-out sugar cookies, chocolate chip cookies, "Grinch" cookies, chocolate crinkles, and hopefully a few more.  Depends on how long it takes to get those done and if I can decide on which recipes I want to use.  Pinterest has a lot of great ideas and I've been pinning like crazy with stuff I want to do.  I still have to finish the kids' hand prints and get those ready to ship to Florida.  I don't want to miss my deadline.  I need to go and finish, but tomorrow I'll post what we're up to and our plans for the rest of the week.  Have a good night all!

Friday, November 30, 2012

It's the Start of Preparing for Christmas!

So Thanksgiving is over!  How was mine?  It was good, depends on how you look at it.  As you're aware my in-laws came over for dinner.  They said they enjoyed the meal and appreciated everything I did for them.  The turkey was done early (earlier than expected) and was falling off of the tasted a little dry to me, and hubby agreed, but the gravy made it taste just fine.  The potatoes were a first for me and I added a little too much salt, but they tasted quite fine.  Everything else was delicious, although I felt stressed and overwhelmed.  My mother-in-law made an apple pie and they brought a bottle of wine that they loved and is very hard to find here in New Hampshire.  This wine is one that my father-in-law wanted for my wedding to his son after we had it at my mother-in-law's parents 50th wedding anniversary in 2007 in Florida.  I didn't have any because I haven't had alcohol in over 3 years, so I figured I've gone this long without it, why drink it if I don't want to.  I didn't have any in Florida either since I was driving a rental car.  Anyways, the kids loved seeing my in-laws and it was a nice evening.

On "Black Friday", I stayed home and didn't do anything since hubby had to work and to be honest I didn't feel like going out with both my kids in tow to all the stores.  But Friday night hubby was flustered with the kids and I was on the phone with my mom and she heard him in the background and offered to come over with my sister and watch the kids for a couple of hours.  We agreed to it and while she and my sister watched the kids, we went Christmas shopping, with what little money we had to at least buy them some gifts.  While we were gone, my mom and sister cleaned the kids' closet out and got rid of a lot of things that we didn't need nor wanted.  She put all the "baby stuff" (swing, pack-n-play, etc.) in the closet and the kids toys were put throughout their room.  They also cleaned out the kids' toy box and cleaned up my kitchen, and did some dishes.  They also put the kids to bed for us.  After being out for 3 hours and going to 2 stores we bought all that we could for gifts.  We arrived home and showed my mom and sister what we purchased because I wanted to be sure that we didn't get any duplicates.  Out of everything we purchased we only got 1 item that my mom had purchased and neither one of us are returning it because the one we bought will be for here at home and the one my mom got will be kept at her house.

Now am I done shopping, yes and no.  I am done as far as I can tell, but we are taking it paycheck by paycheck to see if we have any extra money to buy some stocking stuffers for us (both hubby and me).  The kids and I have also started to make presents for family.  Which is the purpose of this post.  Next Sunday, the 2nd of December, is the First Sunday of Advent.  I asked Little Man if he was ready for Advent.  Now he's almost 3 and I know he really doesn't understand the term Advent, so I re-phrased it by asking him if he wanted to start preparing for Baby Jesus' birth.  Right after I said Baby Jesus' his eyes lit up and he told me in his own way yes.  It brings tears to my eyes when he lights up over Jesus.  At church on Sunday mornings, he loves seeing Jesus and waves at him.  I'm so grateful, but at the same time so sad because hubby isn't there sharing in this special time.  He hates going to church and makes it seem like I drag him when we attend on Christmas Eve, that's the only time he goes.  I worry that as my children grow older they will use the excuse if daddy doesn't have to go, then why should I.  I worry about it, but hope that my son and daughter will always want to go with me to church, besides they get to see my parents for extra time when they go.  

Yesterday started the homemade gifts and crafts for Christmas in our house.  We made salt dough hand prints for family members.  To make enough salt dough for 24 hand prints I used:
  1. 8 Cups of All-Purpose Flour
  2. 3 1/4 Cups of HOT Water
  3. 2 Cups of regular table Salt
I took all the ingredients and mixed them in a mixing bowl with a spoon, once most of the water was absorbed and started to form a dough, I then used my hands and continued to mix it until it was a complete ball of dough.  I noticed that after adding the extra 1/4 Cup of Water that it was a little sticky so I just added a little more flour (like an 1/8 of a Cup) to make it less sticky.  After kneading it for a few minutes, I started to roll it out in small batches and used a cereal bowl to make the circle shapes for the kids to put their hand prints in.  Then one child at a time I did their hand prints.  Little man was very cooperative, however, Precious Butterfly was more difficult and I had to re-roll many of them because she dug her fingers into the dough causing holes.  But once I got them all pressed, there was leftover dough (I needed to make a total of 22 hand prints) I was planning on making salt dough ornaments for our tree, but I ran out of time.

I put all the hand prints on Reynolds Non-Stick Foil on top of my cookie sheets.  I then pricked, using a toothpick, some little holes in them to help avoid additional bubbling, I pricked the kids' names and the year.  I left them to start drying overnight and this morning I baked them in a preheated 300 degree oven for 20 minutes.  I let them sit overnight because most of the comments I read from other people that used different salt dough recipes was that they cracked and bubbled and weren't dry after cooking in the oven.  So I figured give them a head start on drying and then bake them in the oven.  I can say that they're looking great!  They are dry and cooling right now on the stove.  Here's what they look like after coming out of the oven:
So that's what they look like after hardening overnight and cooking in the oven for 20 minutes.  There was a little bubbling here and there, but they look great.  I'm planning on painting them and putting the kids' names and the year on them.  Once they're dry, we'll be sending 2 of the sets to Florida to hubby's grandparents as gifts from the kids.  I won't go into who's getting them, just in case they read know who you are!!!
Anyways, this is just the start of activities for us and it certainly won't be the last!