Calling it straight

Jillian's muscle weakness has always kinda been danced around. When doctors do a physical exam they always mention how floppy her legs are and low loose and low tone they are; however that is normally as far as the conversation about her legs go. Her arms and stomach are low toned as well just not as much as her legs (it has surprised a few doctors that she is able to walk with her tone issues)

Yesterday we visited the rehab clinic at Children's and met a new team that will be following Jillian. It was a little hit to the heart walking through the doors labeled "Special Needs Clinic." I was not well mentally prepared for this clinic because honestly I was not sure what their part in Jillian's team really was, and honestly I am rather use to at this point going to doctors and hearing them say that they are not sure what is going on. They were really nice and we talked about Jillian's history and what she can/can not do. They watched Jillian walk and they did an exam of her muscles.

They told me that Jillian will most likely need a wheel chair for distances as she gets older and grows out of her stroller. That for now since she is ok sitting in her stroller that we can stick to that but at some point to give her independence when we are out that a wheel chair is going to be a better choice.
They told us that it is smart to conserve her energy, to let her walk and move around some but to be smart about it because her energy use impacts all other areas of her body, which we see with her O2 levels. We see that also when we do things out and about. We took her to a museum and she walked around off and on for about 2 hours. For the next 3 days she laid on the couch because her muscles had expended all of her energy and it took her so long to bounce back. It is not good for the rest of her body when that happens. For her it is not about if she can walk, it is about how much energy it take out of her to walk and if she is spending that energy on walking that the rest of her body is not getting that energy and she does not have much extra to spare. This is a kid who is just fine for sitting for hours at a time.
I brought up about therapy and state cutting coverage. They said to keep doing therapy but that we are probably not going to see her advance much past she is now and that to be careful not to push her too hard in therapy.
We also talked about how she turns 3 in December and we could face a fight with insurance to continue to pay for private therapy because they will want her to get school based therapy services. As a licensed early childhood teacher, I don't think sending her to school in December is the best choice for her. I quit my job and pulled her out of daycare to keep her home to try to keep her lungs healthy why in the world would I send her to school in the middle of winter during cold and flu season? Also, academically she is ahead. I know I am a mom and think the world of my kid, but other professionals agree that her logic and reasoning skills are high. To help us prove that she is not a good candidate for school at 3yr old, we are going to have her cognitive skills tested at Children's to show that her delays are physical and not cognitive. I am going to call on Monday and schedule that. The rehab clinic also said they would help us more with this as needed as the time gets closer.
She also brought up the Go Baby Go cars that have been on the news a lot lately. She said we could look into one of those for while we are out if we thought it is something that would help Jillian. I have heard of them but not looked into them, so I need to do that.

As much as that is a lot, it was actually a good conversation and they were super kind which makes hearing all of that easier. I am glad we are finally having this conversation because everyone has dance around it and we needed to have this conversation so we can figure things out past today and plan a little better for the future. This is something Brent and I have talked about before so it was not a total shock to us, it is just the first time a medical professional sat down and called it straight with us about Jillian's muscle issues and what the long term looks like. I would rather them call it straight then dance around it, we need to plan for the future and we need to plan what is best for Jillian and that takes open and honest conversations.
But even with me having an idea that she most likely would need a wheel chair for distances it was still hard to hear it come out of a medical professional's mouth. Its not like we had a diagnosis when Jillian was born and they sat us down and told us all of the things to expect... she is 2 1/2 without a diagnosis. This means we hit different things without necessarily having a guess they were coming or even when we do have an idea of what might be coming, it still makes it hard when it happens. But, we will do what is best for Jillian, that is always the goal. If having a wheel chair to help her with distances and not expending all of her energy then that is what we will do.

We also went and spent some time with my cousin Annie and her little guy Eli while we were at Children's. Eli had been in all week for some testing so we stopped to say hi and catch up. I really value my friendship with Annie because we are both going though a lot of the same things with our kiddos so we are able to relate about crazy medical stuff. We are able to vent and understand where the other person is coming from because we are both going though it. I don't wish any of these challenges on either of our kiddos, but I am thankful that since they are that Annie and I have each other.

I think this weekend is going to be low key for us. Brent just finished the new Team Jilli logo to include her oxygen and I have been working on sewing on his patches to his new adult uniform for Boy Scouts (his old one got a stain that would not leave)

Hiccups

Its funny how one little thing can remind you about how important another little thing is.

Today we forgot Jillian's passy at home. I had a second one in the car and brought it in the diaper bag with us but Jillian did not ask for it so I did not give it to her. She uses he passy to help with her reflux. We get comments from people sometime about it but for her it really helps and the less reflux that comes up the less of it that ends up in her lungs. If a passy helps, trust me it will cost a lot less to pay for braces to "fix" her teeth later then for what happens when stuff comes from her stomach and ends up in her lungs. No, she can not have a passy forever and at some point we will have to get rid of it, but for now it is still really helpful, so it stays. We incurage her to use it when she is really struggling with her reflux but I make her take it out if she is going to talk to me.

I was at work helping train the new 4K teachers for a couple of hours today. Jillian at first wanted to go play with her friends but then decided she wanted to be by me. She hung out playing in my old room with toys and such. On the way home she realized that she did not have a passy. I told her I would get her one once we were home. It was an interesting car ride between her pump erroring 1/2 of the way home and her bummed about not having a passy. When we got home she found her's quickly, but not before getting the hiccups. She has gotten hiccups 4 separate times since we got home. For Jillian hiccups is one of those things that you can tell her reflux is bad, because she tends to only get them when she has reflux issues and you could tell her reflux was a little bit more of a struggle for her tonight. It just reminded me how much her passy really does help her and how for her, yes part of it is comfort, but for her it also really helps her body, and for that keeping her passy around is worth it to me.

On a side note, I am also grateful that she is taking a couple of different brands now. Tommie Tippee switched the shape of their passy a while back and I think the quality of them went down a lot with the change too (I can compare them side by side since I bought every one of the old style I could and she has been interchangeably using the old and the new style for a while now, but I think we are finally out of the old style) The new ones are fine, just not as good as the old ones were. For Easter my mom bought Jillian a collection of different brands to see if she would take any others (we had tried in the past and it had not worked) she HATED all of the ones my mom bought her and will not suck any of them. One day I was at Babies R Us and they had the Gumdroup brand passy in the old Tommee Tippee style so we gave it a try. She LOVES them and they hold up longer, however I can only find them at babies r us. We also tried the Nuk brand and she is ok with them, they are not her favorite ones but she takes them unlike most of the other brands out there, she does like that they have Minnie Mouse ones (how we got her to try it in the first place) sadly their quality is about as good as the new Tommee Tippee ones but they are at more stores and cheaper. Passy is an important thing at our house, something I said no child of mine would have past age one.... back before I was a parent :)

Jilli sleeping in her car seat with her Elsa doll Great Grandma Nancy got her from the Avon catalog (yes I still LOVE her Evenflo Symphony DLX car seat and with her only being 24lb and 33in tall she will be able to stay rear facing, which is by far safest, for a long time since is goes to 40lb rear facing, and we still have not had to move the head part up to the second level)

She posed for a selfie with me after I got my hair cut this weekend

Also, a sweet story of the night, Jilli and I were talking tonight about how 3 more people signed up for Team Jilli today and I asked her as a joke how she was doing at raising money... she told me I could take her piggy bank with her money! It melted my heart and was so sweet. She is only two but willing to give up her piggy bank. I told her it was OK, that she could keep saving her piggy bank for collage and I would help her out :)

OT eval

Today we had an OT eval at Children's. 

Just like I thought, her logic skills make up for her struggles. She scored really low on one part but most of the points in that part were for feeding and since she does not eat logically she will score low in that area. With the low score in that area she would qualify but it would be silly to do ot when she does not need it for the other parts, she figures out how to do things even if it is her own way. She has low tone in her arms but at this point she does not need a lot of arm strength to perform the needed tasks of a two year old. 

I also want to say a HUGE thank you to the people who sent/bought princess dresses for Jillian. I have been blown away by your kindness and Jillian has been elated! I blogged about Jillian being so good about waiting for princess dresses to go on sale and then within a week she would have 4 dresses that fit her given to her. It has really touched us that people have been so kind. This is not something I expected at all and am so grateful for the kind gesture. We have been really touched by this, thank you! I can tell you one little girl is so excited!!! Thank you!!!!!!! Thank you to all the people who walk along side us and love on us during this journey. Everyone has their own stuff in life and their own struggles and the fact that people would take time to come along side us in our journey means so much to us.

Bell

I asked her to stand nice...

She had to watch Beauty and the Beast in her Bell outfit

Anna

GI and fun

Today I'm sleepy, but that cause yesterday was one of those days that we did lots of different stuff and most of it was rather fun. I realized how much I needed my coffee this morning when I started the coffee maker with no coffee under it and coffee flowed all over the counter... at least coffee smells good :)

We have gotten a few messages and calls from people about the tornado in lake geneva to see if we were ok. We are fine, we have no damage or anything... the worst we got was that Jillian''s little tikes care moves about 2 feet over on the deck from where it was :) The path of the tornado went in the opposite direction of our house and it is about a 5-10minute drive down the road from us. Thankfully it sounds like all the people were safe despite the sirens not going off, and that is something to be thankful for.

Yesterday morning I realized we never got the mail Tuesday because we got home around the time the storm started so I went up to the mailbox yesterday to find our Magic bands!!! Our trip is getting close!!! I spent the morning starting to decorate our bands and I am hoping to finish them today. I am really excited for the finished bands. Jilli is just excited that she has a special bracelet to wear at Mickey's house.

I was also able to get Jilli schedule for her OT eval (next Wednesday), rehab clinic (next Friday), and for her eye appointment (first available opening: December).

We then headed to Children's for Jillian's GI appointment. Brent met us there and we decided to grab lunch from the cafeteria since the brand new subway in the skywalk was packed and since Cafe West changed companies I don't like their food as much. What we did not realize was that the main cafeteria is under construction. You can still get food down there right now but the only place to eat is outside, which was fine yesterday because it was nice out. We ate quick and then headed up. Jillian is officially at 11kg! Everyone is happy for the growth but stumped because she has been on the same schedule for about a year and last year she really did not grow much at all. One of the thoughts is that we have seen some good weight gain since she started on oxygen and that maybe her body was using up so much energy before just to breath that maybe now that she is getting help with that, her body is now able to grow. We will see if this trend continues. (She is currently at the 5th percentile for her height and weight for age, but because she is at the 5th percentile for both her proportions are right)

We met a new dietitian and she said to keep doing what we are doing. She was nice but I really missed Carly and Sara, when we changed GI doctors our dietitian changed too...

Jillian's doctor came in. She told us she had gone back and reviewed Jillian's motility study again this morning so that she had it fresh in her mind. She said that it showed an area in Jillian's throat that was not doing what it should. You should see pressures go straight down as food goes down and her's starts off right but does not do what it should all the way down. This make her a little less willing to do a fundo because her is worried that maybe food would not go all the way down then if it was wrapped because it might get stuck above the wrap. She said that if Jillian was a "typical" kid she would be a no brainer for a fundo but with all of this other stuff she is still on the fence and so are we. She told us that there is a really good doctor at Froedtert that works with adults on issues like Jillian's and that she has been trying to consult with him on Jillian's case but that they keep missing each other but he had some consult hours yesterday so she was going to try to go meet with him to see if he had any ideas. She also told us they are trying to get a new testing cath that would be beneficial in Jillian's case but she is trying to get the approval from the hospital to buy this expensive testing equipment. I wish I could send all of our Team Jilli money just to buy that, lol, but it would not even make a dent in the cost (but the money that we do raise for Team Jilli does help with so many things around the hospital!)
We asked if there was anything we needed to keep in mind with taking her to Disney to make sure she has enough fluids. They asked if we were going on a Wish trip and we said no (sometimes its a hard reminder that Jillian would qualify for some of the wish organizations). They said to just make sure she looks hydrated but  otherwise we should be able to do her normal routine. She gets fluids for 17hr a day anyhow so most of the day she is constantly re-hydrating so she should be fine and she is off from 5-10pm when it is cooler anyhow. We told them that we are not bringing the scale or blender with for our trip, we are going to mix bottles as we need them like most parents do, and they said for a week that is perfectly fine and good for all of us to not stress about each drop of water and gram of formula for a week and just be a little lax about it for a short time. Scooping formula is not an accurate way of measuring most of the time for Jilli, that why it is weight to the gram each night at home, but for one week we are going to use the scooping method. I just keep reminding myself that parents of other two year olds are not counting their calories and fluids each day and for a week we can let it go and if we come home and she has lost weight we will figure out a way to make up for it, its not that she will not still get her 17hr of feeds a day of the exact same formula we give her at home, we just wont be measuring it to the gram for a week.
We also talked about how since her testing a couple of weeks ago Jillian has been randomly vomiting small amounts of clear liquid. She does not get upset with it unless you hear or see her do it you don't know she did it until you find the surprise. The day after her surgery we added two new meds and changed the location of one of the meds. The thought is that this probably has to do with one of those but since we did three different things at a time we don't know what is causing it. The goal is to increase her baclofin from 1.3ml to 2ml and we are also going to move her one reflux med back to oral to see if that helps but this time we are only going to do one change and then wait a few weeks to see if we see a change and then do the other.
We also talked about how we are going to need to continue to do EGD every so often to keep checking how her stomach and throat are looking and to see if her hernia is growing. I'm not sure how often those will be. She is two and a half and has already had 3 but I doubt this will continue to be this frequent and thankfully most of the time we are able to combine with with something else she needs to be in the OR for.

Then we headed to the zoo for a little bit since she slept through the zoo the day before. Normally she always wants to see the giraffe, elephant and monkey but she switched it up and instead of monkeys she wanted to see the zebra. It was a nice little walk.
Then we met Uncle Dan at Babies r Us. He was meeting me to lend me a charging phone case for Disney and he suggested we meet wherever we looked at princesses dresses the day before. He let Jillian pick out two princess dresses, Anna and Elsa. She is SO excited and she can't wait to wear them to Mickey's house. It was very sweet watching Dan and Jillian princess dress shopping.
Brent, Jilli and I met Jaime and Jason at Stir Crazy for dinner. Jilli sat like such a big girl and looked at books. It was nice to sit and chat. Then the boys went over to Guitar Center and Jilli, Jaime and I went to BuyBuyBaby. Jaime and Jason are expecting a little boy this December so Jaime and I had fun looking at all the baby stuff. Jilli was a goof and would get all excited anytime she noticed something we owned. She also got excited when we found an end cap full of Little People figures. They had a hair stylist with short blond hair just like grandma Jill. I told Jilli she could have it. It made Brent smile when he looked at it later.
We all met back up at Koops and then headed home way past all of our bed times. It was a really fun afternoon/evening though and we had a great time. It was exactly what we needed and I am so grateful for awesome friends to hang out with!

She put her shoes on herself! (she also set her hair bow on her head herself too!)

Today the goal is to make some Tubie Friends, finish our magic bands and tackle our front all closet because it is a disaster, while I may not have gotten a magic wand when I became a stay at home mom making all the rooms in our house magically clean because I don't work anymore, I have slowly been tacking projects and it feels good to get them done.





 

Her new Elsa dress!

My dad's magic band

Playing with her new toy with uncle Jason

Jilli in bed last night with her grandma Jill Little People

Neuro

A new doctor, some new adventures!

Today we met a new neurologist at Children’s. Once I got in the parking lot I got a phone call from the doctor that said that he was reviewing Jillian’s chart preparing to see her and realized she had a muscle biopsy done and that the final results were not back yet so he was not sure how much help he could be today without that and did we still want to travel to see him. I said since we were already there we might as well.

The nurse did intake questions with us. The doctor came in and looked at Jilli while the nurse asked us questions (I really liked the nurse) he watched Jillian walk and felt her legs.

He then asked a ton of questions. He was upfront with us and said the muscles was not his specialty in neurology, he was a seizure specialist, but he was willing to try to help us with what he did know. I appreciated that he was upfront with us. He referred Jillian to three other clinics at Children’s:

1. 1 Rehab: this clinic works with kids with tone issues like Jillian. They use a comprehensive approach. I have heard of this clinic before but Jillian has never been there so we will see what they have to say.
2. Eye: Jillian has never had an eye exam other than with her ped. They just want to make sure that none of her coordination issues are eye related (throwing, kicking, and not running into walls are all issues for Jillian. We don’t think it is her eyes but we don’t want to look over it just incase it is related
3. OT: Jillian was tested for OT at the same place she gets PT and speech a year ago. Her logic skills are super high so she finds work around to her limitations for the things on the OT test (puzzles, stacking blocks, ect) The dr today wants her checked by children’s OT department. I’m not sure that she will qualify but we will have to wait and see what they have to say.

He did tell us that her muscle biopsy is not finished but the first part showed small muscle fibers which are a sign of atrophy so they sent the sample to another lab to look at it more.  Please pray they find definitive answers. He said it will probably still be a few more weeks before it is done and that if we can not get genetics to give us results to call him and he will help us.

He also told us that the Children’s person who is good at muscle stuff is at UCLA for the next year learning more and that he should be back next July. He said at that point we should transfer care to him. He said that if her test does come back showing mito that he will help us to figure out who is the best specialist closest to us for mito and he will send us there. I am thankful that he is willing to help us find the best doctor even if they are not at Children’s. He sounds like he is willing to look out of the box and beyond the people around him to find what is best for my kid… we just need a diagnosis. He even asked about seeing if there is studies or other things along those lines that could help her once we have a name for “it.”

He was surprised that her intellectual skills are so high (not uncommon if it is mito) and that she could walk, he was expecting a kid who could not move. She has such an odd mix of things.

So for now we see what new info we learn from our new specialists and we wait for the muscle biopsy to come back. I pray that they take their time and are able to figure out what is going on with her muscles.

The appointment wore her out. Mom and I took her to the zoo after and she fell asleep in the car. She slept the whole time we were at the zoo which her taking a nap at all is super strange. So mom and I walked around a little and then left. She was also excited today too because this morning we went to Babies R Us to get her a stroller fan for Disney and they have princess dresses in her size. Normally they don’t start til a 2T and that would be huge on her so she was all excited to see Else, Bell and Cinderella dresses in her size… now for them to go on sale, but she was really good about not getting one today and waiting for a sale, I was really proud of her. She kept saying “I princess. I pretty.” She also successfully tore open her first shirt of the day. I had a doctor appointment for myself this morning and she was sitting in the waiting room and said “a pocket!” Her shirt had ruffles in horizontal lines on it. She pushed the ruffle and the shirt ripped apart. Thankfully Target had kids shirts on clearance so I got her a new shirt for super cheap (ps if you have a kiddo in 12mo-3T the Target on Mooreland Rd. had t-shirts and shorts for $2-5 each)  

Tomorrow we have her follow up with GI. We will see what that brings!

Jillian sitting yesterday and "writing" the names of each of her princesses

Feisty

I'm a little feisty today... woke up that way because I knew I needed to take care of a few things this morning.

1. I am STILL trying to get an answer if neuro will see Jillian. Her GI doctor told us 2 weeks ago after her surgery that she wanted neuro to be back involved in Jillian's case for multiple reasons. I called the next day and tried to get her an appointment. They needed an "official" referral from the dr before they would talk to me. I got them one of those. I called them back last week. They called me back this Monday asking me why they should see Jillian. I tried to summarize it all in a nice neat package but it is not a short story... I really just wanted to say "cause I said so" but I knew that would not work, not even her doctor referring her was good enough. I was then told that the neuro triage nurse would look at Jillian's case and decide what would happen next. I just call again (since it is now Friday) and left another message to figure out what is going on. I hate feeling like I am bothering people but it should not take 2 weeks just to schedule an appointment, let alone who knows how long it will take to get in to see a doctor. She is already on a new med that we want neuro's opinion on, I would like her seen soon.

2. Yesterday morning Jilli and I went in to visit with people at my old job. It was one of my co-worker's last day so we went in to tell her goodbye. Jilli had fun seeing everyone. We rushed home for oxygen delivery and sat here and sat here and they never showed up. They are suppose to come sometime after 1pm on Thursdays. They have come anywhere between noon-4 however they are open til 6. That is my Thursday afternoons, cable companies 2 hour window looks great in perspective (I had to ask for after 1pm, they wanted just anytime Thursdays). This morning I called to see what happened. With Jillian's surgery a couple of weeks ago we were not out and about as much so we have some extra tanks right now, so we could make it to new week if we needed to, however I wanted to know why I spent my afternoon sitting here instead of doing the things I needed to get done. They called me back shortly after I left a message for them and said something messed up in the automatic delivery system and it is fixed now and someone will be here sometime today. I need to get two Tubie Friends made (they are having a big fundraiser right now, check out their facebook page) so that gives me some time. While I was on the phone with him I was also able to get stuff situated for the portable oxygen concentrator for Disney since we are officially less then a month away! Yes, Jilli and my clothes are all picked out and I have started putting everything together, I have to be organized to make this trip run smoothly, I want to just enjoy our time there and not worry if we have enough syringes ect.

3. So the state came back with a decision about Jillian's PT... for some unknown reason they think 6 sessions of PT over the next 6 months is the appropriate thing! Once a month... for a kid with low tone, at the 8th percentile on the PT test, on oxygen for endurance and dropping numbers when walking, and just had muscle taken out of her leg to confirm a muscle disorder!!! The whole thing that there was ever a question about covering PT for her still blows my mind and there answer shocks me. My best hope is that when Brent starts his new job next week that their insurance plan offers a good amount of covered PT a year, otherwise it is $85 a week out of pocket. This whole situation is mind boggling to me. Do they think we drive 20min one way each week for PT for the fun of it? We have nothing better to do? No, we do PT because it helps Jillian, the politics of this all is crazy.

So thats been my day so far. I was talking with another special needs mom recently and we were talking about how this is the side of SN parenting people don't see. They don't see how to get our kids the things they need is such a fight. Sometimes you are lucky and things run smoothly, but all too often the basics are a fight, and as a confrontation avoider this is definitely stretching me. We will figure out today's hurdles, just as we figured out all of the hurdles before, I just hate calling people and telling them they dropped the ball.

She makes all the fighting worth it!

I am not sure what that crane was about to do to the princesses but I love listening to her pretend play, it is super cute (this is also a rare site of her laying on her belly, her GJ tube does not prevent her from laying on her belly but I doubt it would be very comfortable so it is super rare to find her laying like this) 

Blog post number 300!

This post feels like it should come with out soundtrack, cause right now my head feels like a radio with the random sounds linked to emotions for this post...

So now your thinking... big deal 300 posts, some people blog daily and accomplish that in less then a year, you started this blog in 2012...

True, but as I noticed yesterday that I had written 299 posts (yes if you add up the numbers on the side you will be missing two that have been written but not shared, I'm the blog master, I get to do that!) I started thinking about life since that first blog post (yes this is going to be one of the sappy, look how far we have come posts, here is your warning to jump ship now if you wish)

I started this blog for a place to write about teaching. I was posting teaching ideas and different things that I had created. Thats all this blog was ever intended to be. I had just started following other teacher's blogs and wanted to give back to that community and share things with others as well. The first 20ish posts were just about that, teaching. There was also the one with our cool movie posted pregnancy announcement in May of that year (what happens when you have two people who took several graphic design classes in high school) but by October 2012 this blog went silent... the crazy had started.
See in October 2012 I started having contractions WAY too early and was put on bed rest, no one thought I would make it until my due date in December. By a lot of prayer (and a lot of pain... I had daily contractions) we made it to December and Jillian was born. The blog still sat silent until April of 2013 when I needed someplace to give details about what was going on with Jillian, who by this point had a NG tube. Short facebook updates were just choppy and it was hard to explain what was going on in a line or two. I also needed someplace to get it all organized.
I was really hesitant at first to blog about all what was going on with Jillian. I did not want to come off as negative, or whiny. I did not want people to feel sorry for us and I kinda felt like I would overwhelm people with it all, cause honestly we were rather overwhelmed! That first month of blogging about Jillian I made 23 posts, most of them about the time we spent in the hospital that month.
I just kept thinking this blog would go back to being about teaching once we just figured out what was up. Sorry the couple of people who still follow this blog that I met from the teaching community when this blog first started, a little girl has taken it over, and its hers now. Not that I dislike teaching, I still post new things from time to time on Teachers Pay Teachers, but I feel not need now to promote those things with blog posts, you like them or you don't, I worked in sales in collage and at this point I am ok with just letting what sells sell, not like I make much after TPT's cut.
This week has been full of reflecting anyhow with Brent's grandma passing. I have been going though pictures (which Jillian has really enjoyed) and looking at life in the 10 years I knew grandma (yes come this November Brent and I will have been together for 10 years, crazy!) This week here has been a wrestle with the why questions, and I have been thankful for some awesome friends who have let me ask the hard things and reminded me of the truths I know.
Earlier tonight a cup grandma got me a couple years ago for Christmas shattered on the floor (I have several different coffee mugs that mean a lot to me, 4-1 from grandma with the letter U on them that she used to remind me I was part of the family, one from a dear friend in collage that now owns her own coffee shop, and one from a woman's retreat where the speaker hand made us all mugs) Brent and I just stood there looking at the mug stunned, we have had these mugs for a couple of years, but not long enough that I would call them old. We use them frequently as they fit the 10oz cup setting on my Keurig with just enough room for the amount of creamer I use, but they don't look in bad shape at all. And within a second we lost one, gone. It just felt like the past week of our life. If you had asked me two weeks ago who I knew that I thought would die next, grandma Jill was not high on that list (not that I am counting down or wishing for anyone else to die) but yet here we are now and it feels rather like that mug on the floor. But I will always remember there were 4 mugs, just because that 4th one is gone does not mean we forget, or treasure any less the person that got them for us. Yes, if you had told me when I started this blog in 2012 that grandma would be gone now, I probably would have screamed at you, and not believed you.  

We did get some good news today. While I am still trying to get Jillian into neuro, her results from the samples they took in her throat and stomach came back (this is NOT the same thing as her muscle biopsy, that still has several weeks before we find out) and even though her throat looked bad the testing on the sample came back better then they thought it would. This is good news that we are grateful for! We see GI again next week to talk further about things.
We took the bandages off her leg tonight since they had hit that gross dirty look and we were at the point that the surgeon said they could be taken off. The scar looks great and is healing really well. The worst part of it now is the yucky tape marks.
Tomorrow we find out if the state has decided to start paying for Jillian's PT again. I am really hoping so, I hate fighting over stuff like this. Trust us state, we don't do PT every Monday 20 minutes away because there is nothing better to do.

Some interesting stats on this blog:

Top 3 posts by views:
1. Securing a GJ tube
2. Why Awareness (this one was picked up by a special needs mom page)
3. Securing a GJ tube part 2

1 & 3 don't surprise me because when I was trying to figure it out I google searched how to tape that silly thing a ton of times myself, prompting me to blog our solutions because there was a lot of trial and error that went into figuring it out and I am hopeful that the info helps someone else

The post I did on her Comfy Lift bed gets visited frequently as well

Most people get to the blog by facebook. I do post the links to most of my blog posts on my facebook page but not all, including not all the ones I wrote this week. Google sends a few this way too, a lot of them come from a search for yellow vomit... :)

*yes in case you did not know, it tells me how many people view my blog, from what county and how they got to the site, not it does not tell names, ect, I can't see who exactly looked at the blog just statistical numbers*

But the point of this blog is not views, even though it means a ton to me that people read it, and while it has changed from a teaching blog to a special needs mommy blog (it is still weird to type that cause I still don't always see myself as fitting in as a special needs mom) there are still some basic goals of this blog:
1. Document the journey, both as a reference and a reminder
2. Share info we have learned along the way to help others
3. A place for me to get some of my thoughts out
4. But most of all, my prayer is that you can see the works of God in this blog and that it would lead people closer to Him. This includes me, that I can look back all of the different things I have written about and use it as a reminder of all the things God has done for us! 

So there you have it, my sappy 300th blog post, and a record for this week, I made it though without tears! Hope you enjoyed and hope you continue to enjoy!

The little things

Tonight we decided it was a good night for grandma's "yummy chicken recipie" 

When we got married grandma made me a cook book with different recipes from all sorts of people from Brent's side if the family, however there was one recipie from her in the front. It says to drive to KFC, order chicken, drive home, eat. We all had a good laugh when she gave it to me. Since the only person at our house that still has a gull bladder does not eat orally, we don't use grandmas fried chicken recipe often, but when we did I would call her and we would laugh. We decided earlier in the week that we needed to have her fried chicken tonight so Brent picked up a bucket on his way home. 

Right now we are at the point where all the little things remind her of us. Grandma loved to shop so we have different things around the house the she has given us over the years. Tuesday I went to get dressed and a pair of fuzzy socks rolled onto my toes. Grandma got me fuzzy socks each Christmas because she did not want me to be cold. She always got Brent slippers. 

Jilli and I spent last night at my parents as Brent, my dad and Seth spent the night at Dan's house. When we got home today I set jilli down in the living room. I got all the stuff out of the car and came back into the living room and Jillian was reading a card grandma sent her. Grandma frequently sent jilli cards and post cards and jilli loved getting them in the mail. 

My coach purse was hers and my coach wallet she gave me as a gift a few years ago. 

While Brent and I have teared up when we thought of grandma and each of these things, they reminded us of her and the things she loved. They remind us of her love for us. She was one of those people who I knew loved me no matter what. She choose to love me. She loved Brent so much and in my last conversation with her she was talking about how  incredibly much she loved Jillian. I was blessed today that one of Brent's second cousins was able to send me the pictures off of grandmas phone today. Jillian curled up on my lap to look at the pictures with me. Out of the over 900 pictures, the majority of those pictures where of Jillian. Jilli was so surprised there was so many pictures of her and we talked about how grandma jill loved her so much. 

I was also able to order jilli a dress from Janie and jack tonight for the service after driving to Milwaukee yesterday and the store not being in the mall anymore. Thankfully they have their end of season sale going on right now so I got it at a price grandma would have been proud of. 

So that's life here right now. Tomorrow my goal is to figure out what is going on with neuro and when we can get Jillian an appointment. 

whirlwind

The past week and a half feel like a crazy hurricane. Between Jillian's surgery and grandma's death, life is just odd at our house right now.
Jillian's leg is healing well. We were able to give her a shower on Sunday which helped with the appearance of her leg (it looked kinda bloody before). She is walking off and on. She is still falling a good amount while walking but yesterday evening looked better. Monday in therapy she took a couple of good falls, just trying to walk, to the point they were concerned about if we needed to fill out accident report paperwork, but I told them it is how it is right now. I would not be walking very well either after they sliced open my leg and took muscle out of it. We are also trying to gauge right now if all the muscle weakness is from her surgery or from the new medication that she is on that can cause muscle weakness. Her doctor and I have been messaging about it. Her doctor also sent over the referral for neuro today so hopefully we can get the scheduled soon.
Speaking of therapy, the state decided they don't need to pay for Jillian's PT anymore... not that the child who is at the 8th percentile on the PT test or who scores in the 18-21mo old range (she is 31mo old) needs PT or anything. Oh and how about the fact the her oxygen drops during PT and we have to closely monitor her oxygen, but they wont pay for a pulse ox at home so it would not be safe to push her at home like we do in PT. I knew the therapy place has been fighting for her to still get services but as of Monday her payments were up. We are still trying to fight and hopefully we will persuade them,  but for now we had to agree to pay for therapy out of pocket. This is one of those problems when  a child does not have a diagnosis, this is not the first thing insurance has questioned paying for because none of her labels would warrant all of the stuff she needs.
There has been some good out of this week. Brent got a call on Thursday while we were in the OR pre-op area that he was offered a new job. This is a huge answer to prayer as his current job is in the process of closing their Milwaukee plant. They already laid off a lot of people and while they kept telling Brent he was safe, we were very uneasy about it all. If he did continue to stay employed there he would need to travel more and a lot of other things were still really up in the air. This new job has EVERYTHING we were looking for in a new company. It is such an answer to prayer. He is really excited about this new adventure, but the poor guy his head has just been swirling this week between the excitement of the new job and the devastation of his grandma's passing. She would have been one of the first people he called to tell about the new job (they talked several times a week) and it has been hard on him to not be able to tell her.
I think Jilli is just confused by her world right now. She is not use to mommy and daddy crying, and by this point in the week my eyes hurt from the tears. She keeps telling me to fix it mommy. To take Grandma Jill to Dr. Anna from Daniel Tiger and make her fix it. It is really hard to explain to a child who lives in doctors offices that the doctors could not fix it. She has been to a couple of funerals, my great aunt and my grandfather's best friend each died this year, but she did not understand what was going on at the time, she is older now. She knows the Grandma Jill was going to be at Disney with us and she keep reasoning with me that she will ride on an airplane and see her. Going to Disney and her not being there is going to be hard. Today we are going to go to Janie and Jack and find Jilli a dress for the service. Grandma would make trips to the mall by them and send me pictures of all of the clothes in there that she thought Jillian would love. She was always looking at their clearance racks and trying to find a good deal. I would always laugh when she would call me to tell me of the new clothing line they had and how cute it was. When my great aunt died a few months ago I was looking for a dress at Janie and Jack that I had seen on the clearance rack before my great aunt passed and sent Brent into the store to buy (he never did find the dress I sent him there to buy but he did find a cute one on clearance). Grandma thought that story was so funny and she went to her Janie and Jack and ended up finding the dress that I had sent Brent to buy, we all just laughed and laughed about it. Here is to hoping a find a dress there today that will fit Jillian and be a reasonable price!

I want to send a BIG thank you to everyone who has sent us texts, called us or left us facebook notes the past few days. They have meant SO much to us and I can't thank you enough. Thank you to Jaime and Jason for coming over last night and having dinner with people with bloodshot eyes and probably did not make much sense from the lack of sleep. Thank you to my mom who came over Monday morning when I called her crying after we got the news that family needed to come. My mom came over here and helped me take care of Jilli, helped with therapy, and got me Starbucks. She called me over and over again yesterday to check in on us and see how we were doing and how she could help us. Grandma Jill took my whole family in as her own, not just me but my family. She always made a point to have dinner with my parents when they were here and she and my mom would talk even without Brent and I around. She always asked about my grandparents, brother, and friends, and she kept up with what everyone was doing and how they were. She made it a point to include people that mean a lot to Brent and I in things. The pain of this is still so intense right now.

So thats our week so far. Its only Wednesday  but feels like this week has been forever. Thank you to the people who have loved on us, we truly appreciate it.