Heart

Some seasons are just harder then others. Living a medical life is a lot of fight really hard for a season and then wait for a while. Both seasons have their challenges. In the waiting I'm frustrated because things are not moving, in the rush I start to feel overwhelmed. But at the same time each season has its blessings.

This week has been hard on my heart. They say most parents of kids with special needs have at least some PTSD, and the older my kiddos get the more I realize how true this probably is. But for my girls are 100% + worth it! This week has dug up feelings I have tried to forget. I try to live in the now... it is something my girls have taught me. While my calendar is full of appointments and there is a lot of time management that has to occur for us to function I use to be a crazy planner and I have let that go to live in the now. Many times my plans get changed from what I thought at this point anyhow (and I am so thankful when people understand our plans have to change sometimes but still love us enough to get together when we can) But this week has reminded me and dug up the feelings of when Jilli was so sick when she was little. Back at the times of THIS blog post. While Lydia very much is her own person with her own personality, this week has been a flash back to when little Jilli was so sick.

Wednesday went pretty well. Her normal amount of choking in the morning but overall we had a pretty good day. It was the down day that we needed. Wednesday night into Thursday morning was rough. I spent more of the night awake with her then asleep because she was choking so much. The episodes would only last a few minutes and then she would fall asleep again and just as I would start to get to sleep again too it would start all over. Her movement monitor also went off during the night although I am hoping it was a false alarm. While she was choking frequently none of the episodes were anywhere close to as bad as Monday's. Thursday morning I woke up debating if I should call GI and Lydia gave me the answer by choking and vomiting a ton of clear liquid all over me. I called the GI nurse and told her what happened and she said she would call me as soon as she talked to the doctor. When I had talked to the dr on Tuesday she had said that if the choking got too much worse we would have to admit her so after talking to the nurse I started packing us all just incase (that is not a quick task with all the stuff that comes with the girls) and then I waited and waited and waited. The nurse finally called back in the mid afternoon and said that she talked to the doctor who is away at a conference and the dr talked to pulmonology and they want us to see the airo-digestive clinic at somepoint and that the doctor would call me herself when she has a chance around the conference she is at but that we were not being admitted at that moment. Lydia had a rough day Thursday. She screamed anytime I put her down and once she started to scream she would choke. It was a rough day.
This morning Lydia had her upper GI done. The plan had been for her to go into floro and they pull her NJ tube into her stomach and do the test putting the liquid through her tube and then wheel her to IR to have them either put the tube back where it belongs or replace the tube. When we got there and IR doctor and nurse came out and said they decided to just do it all in IR instead of wheeling her around for which I was grateful. They took her back and about 15min later a different doctor came out and asked if there was a reason we were doing it this way. I said no that to get this thing scheduled has been a mess and I agreed to what they all figured out after a month of back and forth. He said it would be easier to just stick an NG down her mouth and into her stomach and do the test that way instead and then not mess with her NJ at all. He said he had tried to contact the GI doctor but could get her because she is out of state so he was looking to me for the ok for the new plan. I told him it was fine with me as long as it got what GI wanted. He said it would so we agreed. About 15minutes later they brought her out to me. She was calm when they brought her back and as I held her she just smiled at me. While my goal was to hug to her comfort her, I think she did most of the comforting at that moment. That smile is exactly what my heart needed. Today has been better then yesterday. We were up a few times during the night but not as many. Right now she is happily laying in her swing looking at me while I type.
I just want to do what is best for her. I just want to help her the best I can. As I was driving today I was pondering about worry. About how when I worry about something over and over to the point that it give me anxiety that is bad because it becomes consuming and my main thought, but that God does use worry at times... worry that causes action, this worry is different, its not mind consuming playing like a broken record, instead it causes you to move, to react. Right now I am worried about Lydia. While she is finally growing and getting the food in that she needed (step 1) these choking episodes are scary. Some are rather innocent and Brent and I shrug them off while others are frightening. I'm worried about her aspirating; and while it would only be stomach bile, stomach bile still does not belong in the lungs. Last night her lungs sounded rather rattly but are better today. But this worry is causing action. Right now Lydia is always within sight and sound of an adult. We have been told by multiple medical professionals this week that if she turns blue we need to go to the ER asap. Medical professionals do not randomly tell parents to bring their kid to the ER if they turn blue because the likelihood of most kids randomly turning blue is low, but right now Lydia's is higher.  So we have adjusted ourselves to making sure she is always watched during the day(we do try to get some sleep) and keep the movement monitor on her at night. Right now the plan still is to do surgery on the 9th. Right now the still feels so far away but I'm sure with Brent's surgery this week we will be busy.

Prayer Requests:
1. That if we need to do more then we are doing now to help Lydia that it is made known clearly as well as a way to best help her.
2. Lydia has a speech appointment on Monday where I need them to understand how not safe it would be for her to eat orally right now. She is not handling her own saliva at the moment and I know what it is like to give a kiddo in that position milk orally. We have to jump though this hoop to move forward but I am still stressed that they will try to push her too much.
3. Prayers for the doctors who are trying to help us. My kids are complex and they like to throw the "shoulds" out the window and this throws others for a loop. Our doctors work very hard for our kids and even when we don't always see eye to eye on everything they still are doing what they think is best because they care about my kids.
4. Prayers for Brent and I. The Tenth Avenue North song Worn ("I’m Tired I’m worn, My heart is heavy, From the work it takes, To keep on breathing")is how our hearts feel at the end of this week but we are trying to remember that He has this all. That He will use this all for good (and no my definition of "good" is now rainbows and sunshine and magically everything is "amazing", my definition of "good" is when everything leads back to God. When even in the struggles we can still say "God is good and all the time God is good." I'm still amazed that God entrusted me to be these amazing girls mom and I have seen over and over how He has used all of this for His good... but that doesn't mean there are not times that are hard) Right now we are each dealing in our own ways (he is puttering with computer stuff as I blog) we are trying to make a conscious effort to help each other.
5. Brent's surgery on Wednesday. It should be routine but surgery is never fun. Prayers for the doctor and staff and for his recovery. Prayers for figuring out the balance here while he heals. Prayers that this gets rid of the infections he has been having that have been causing a lot of issues for him.
6. Prayers for Jilli. She not only got thrown into this sister thing but the last 10 weeks have been crazy. It is really starting to effect her. She is very stressed about where daddy is and when she will see him next. This is new and causing her to wake up screaming many days because she wakes up after Brent goes to work (Brent's schedule really has not changed, but her's has). I've pulled out many of my teaching tricks and while it is getting better she is still having a hard time. Today she had a really rough day and her behavior was not like her at all. I get part of it is that she is 3, but part of it also is that she is a very smart little girl who realizes a lot is going on right now and she is trying to process and deal with that and that is a lot for a 3 year old. She is handling it like a 3 year old which is all anyone can expect from her but it is hard when that turns into her trying to drive a powerwheel into a friend's inground pool this afternoon while she laughs at us as we tell her to stop and three adults had to go running and stopped her just in time. On top of the stress of the girls health it makes 3 year old behavior feel stressful. She is also coping with the fact that her legs are causing her more pain (figuratively and literally). We have an appointment in October for that but in the meantime she is asking to be carried a lot more.
7. That insurance quickly decides to help pay for formula. From Walmart it is $44 a can which would total $394 a month. Thankfully my dad works for Abbvie so we were able to just get a case of it at a discount however there are limits on how many cans of formula you can buy at the discount. Lydia needs to be a little older to qualify for the state program that helped with Jillian's formula costs until we got insurance to help  pay.  This getting taken care of would take one things off my mind.

Thank you so much to the people who love on us and support us and walk this journey with us.

We really appreciate it!

the girls cuddling

Merry Go Round

Some weeks I feel like just a mom, other weeks I feel like a care coordinator... right now it is the second.

Jilli:
Jillian's walking has gotten rough and seams to be getting worse, not better. She is falling more and getting hurt more when she falls. She is complaining of frequent leg pain. Her walk at this point looks more like a child first starting to walk. When we saw the EDS clinic they said we needed to brace her legs. When we met with PT this week they agreed. I contacted Shriner's Hospital in Chicago as my grandfather is on the board there and they do ortho. We have an appointment on October 6th. I'm hoping she does not injure herself again before that because she really needs these braces. The debate now is if she needs a SMO or AFO.

Lydia:
Lydia's medical stuff is making my head spin right now. Friday I got a call from the GI nurse that the dr wants the upper GI study done before her surgery on the 9th so after multiple phone calls that is scheduled for this Friday. The nurse also said that Lydia is too small to get a GJ tube so for now we should just put a g tube in and feed her Alimentum into the G... I stopped her there. First of all we have switched Lydia to Elecare because she was still having issues on Alimentum, second this child can not have g feeds... that is not going to work. She is not handling her own spit in her stomach! Monday we were driving to Lydia's ped appointment and she started choking and vomiting in the car, bad! Like gasping for air and holding her breath and Brent yelling her name until she caught her breath. We pulled off the road it was so bad. She was covered in vomit of spit. It was one of those times where you are never so grateful to here your child cry because you know they are breathing. By the time we got to her appointment she was fine. This choking episode was scary and shook Brent and I up. Lydia chokes everyday and that is our normal but this was so much worse then normal.
 She is up to 10lb and her ped said that the "normal" stuff looks good! She did have a labial effusion that we were able to take care of in the office.
Last night her GI doctor called so we could talk. I am so thankful for her calling because then things did not get lost in the telephone game. She told me that the hospital's policy is they don't do a PEG GJ tube until at least 5kg but they prefer 7kg (Lydia does not weigh that much yet). I really feel that we need to be able to drain her stomach to help with her secretions. We have decided to go ahead with the surgery on the 9th and place a g tube and use it just for draining and leave the NJ tube in to feed her. Once she reaches the magical number then we will switch her to a PEG GJ and as soon as she hits 10kg we will switch her to a GJ button. Not the perfect plan but a plan that I am hoping will help Lydia. Her GI doctor is also going to call pulmonology today to see if they want to see her with all the choking and if they are interested in doing a bronchoscopy (scope of the lungs). We talked about the formula change and she is glad that it is helping her gas pains but the obviously that is not going to do anything about aspirating. I did find out that the whole speech run around we went through was the covering GI doctor, not ours (that made me feel better). We talked about Lydia's choking episode on Monday. She said that if that happens again we need to go to the ER and admit her and we will rush the g tube surgery. She said if the choking overall gets worse to call her and she will admit. I am really hoping we can make it to Sept 9th for Lydia's surgery because Brent is having his tonsils out a week from today but if she needs to go in early we will cross that bridge and figure it all out somehow. Somehow all the pieces end up working out. Lydia woke up choking again this morning but it was not any worse then normal, so we will see how the day goes.
I'm also going round with med supply right now. The dietitian called on Friday and while Lydia's weight is up, she is still hanging out at the 15th percentile (she is still in newborn clothes and diapers). We are bumping her to 24cal formula. We have also decided that Elecare is the best choice for her. Elecare is very expensive. Before I was breast feeding and that costs nothing and then we were on normal formula and while that costs something it is not crazy... this stuff is crazy. Our insurance covers it for Jillian. Well the dietitian put in a script to med supply to get us formula from them so insurance would cover it. Well med supply is saying they can't figure out if insurance is going to cover it or not and the only way to find out is for them to send me 3 cans and wait to see if they will pay... 3 cans at $65 a can! And a can last 3.25 days. They said it will take 2-3 weeks to find out if insurance will pay. So we are getting the 3 cans from them and then will buy the rest elsewhere until we know if insurance will pay (Walmart sells it for $44 a can but it has to go through med supply for insurance to even consider paying for it). I am really hoping insurance pays!

We went to Door County this weekend, just the 4 of us. My parent's own a place up there so we just went up and hung out and spent time together as a family. On the wway to Door County we met friends at eh Children's museum in Green Bay. Yesterday my mom and I took the girls to Madison. My mom starts back to work this week and we wanted to do one last adventure. We went to the children's museum and the zoo. It was a fun day! Also Team Jilli is up to 42% of our goal raised!

Smiley Lydia

Jilli made a bubble wand

Jilli and Caroline playing market... they like to do this at children's museums together

I LOVE the Ergo!

Jilli after the children's museum

Lydia's swimsuit

Saturday morning it was pouring rain so we went to Hands On Art as a family and painted a project together

Lydia thought that stopping at the winery was really happy!

It is debated in the tube feeding community about swimming in natural bodies of water with a surgically placed tube. We take the safe option and don't let Jilli swim in natural water and since Lydia is getting a surgically placed tube we brought her to the lake to put her toe in before her surgery.

Matching girls

Sometimes when we got to restaurants they will bring crackers or water for Jilli just trying to be nice. We smile and say thank you because there is no point in making someone feel bad for trying to be nice and Brent or I will eat/drink it. Saturday night we went for dinner and they brought applesauce for Jilli. This one we could not eat because I am deathly allergic and Brent does not eat apples around me... we just laughed that this bowl of applesauce could kill 3 people at the table. 

Flexible girl!

We went for a hike at the state park. Jilli loved it!

Lydia's first hike!

Jillian loved this swing! She kept telling me that it is good for her muscles

Jilli driving the police car

I went to go to bed the other night and looked down and Jilli had put her princesses to bed

Jilli loves the water room

We made a marble run together

Riding on the carousel at the zoo

Jilli was hot

Lydia on a train!

Genetics

We finally got to see the clinic for "this" this week.

On Tuesday afternoon we met with the Children's connective tissues disorder clinic. I was feeling really at peace the day before and that morning which is not typical for me before a big appointment. I was even more at peace when we got off the elevator and standing there was our favorite nurse at Children's. She use to be our GI nurse so she has known Jilli since Jillian was Lydia's size. She did all our check in stuff and we got to catch up a little bit since we don't get to see her as much anymore. First we met with a genetics counselor who went over family history with us and talked a little bit  about connective tissues. Then the nurse practitioner came in and talked about symptoms and Jillian and Lydia's medical history. New another genetics counselor came in to talk about the re-run of the whole exome sequencing. I was a little annoyed with her because I have been asking since April when that test was going to be re-run, and when Lydia was in the hospital in July the genetics doctor asked her to re-run it, however we get there on Tuesday to find out she still has not even submitted for insurance approval! She had us sign a form and if I knew this form needed to be signed sooner I would have happily gone to genetics to sign it one of the many times we have been at Children's since April. After she left the room the genetics doctor walked in along with a bunch of students. He did connective tissue assessments on all of us. He said that we are all hypermobile.
Then we got into the diagnosis part... he said that giving us a connective tissues diagnosis would be a copout because we show symptoms of that and so much more. He said that while we have connective tissue issues, there is more then just that going on and to call it that and stop looking would not be the best thing for us. He said we most definitely have Ehlers-Danlos syndrome tendencies, however this is more then EDS. EDS is not completely off the table, but a connective tissue issue is most likely secondary to something else. He thinks it is a mitochondrial disorder. We just keep coming back to that over and over, but have not been able to scientifically prove it yet, however it is the thought of so many doctors we have seen. He wants to do some more digging into mito again. They are going to look to see how much of Jillian's muscle biopsy is left from last year to see if we can do more testing on it. They tested it for the most common 36 muscle disorders however now they would like to test it for the less common or look for changes in the mito DNA that they don't know about yet. I am hoping to hear back soon about how much muscle is left and that if we need to take more that we can do that on September 9th. We are also going to re-run some blood work on Lydia that was off when she was in the hospital. That bloodwork also points to a mito issue. While we are getting blood on Lydia we are also going to get blood to store for DNA testing incase they find something on Jillian's exome sequencing so that we can compare the two. We are following up with this clinic in 3 months.
Other then exhausted after this appointment, I feel hopeful. Too many times we have gone to genetics and I have felt like they just dismiss us saying there is nothing more they can do, however this time we left with a plan and a follow up appointment that is not a year away. This doctor really wants to help us, you could tell by the way he talked that he wanted to help us get to the bottom of this and he wants to make sure we get the right diagnosis. It is a little hard to hear that this is too severe to be EDS, but comforted to know that they are going to figure out what it really is. Science is finding more and more the EDS and mito seem to be connected and effect each other which is why you see similar characteristics.
We also talked to the doctor about ankle bracing. We have been trying to hold off as long as possible but with 2 sprained ankles in 3 weeks it needed to be brought up again. Her PT asked us to ask the doctors at this clinic their thoughts and they said it is time so we will talk to her PT on Monday to see what the next steps are. We need to help support her ankles better.

Other things going on here right now:
-We came home Saturday to our garage messed up. Its one of those situations where you walk in your house wondering what is missing and if anyone is still in there, however to our relief nothing was missing. We went back to the garage and found that while stuff was messed with, nothing was missing. Sunday morning we were leaving for church and found more of a mess and I watched a raccoon scurry across the garage. We came home from church and the garage was trashed! There was stuff all over the floor. On top of that the raccoon ate the wire for the sensor for Brent's garage door and broke the spring on mine. Brent spent part of Sunday fixing things the raccoon trashed. Brent got the raccoon out on Sunday. Oh the fun of living in the country!
-Brent's tonsils have been infected for months and are just getting worse. He went and saw his ENT last week and they said they need to come out asap as his body is now struggling to keep up with the infection. He is having surgery to get his tonsils on August 31st. Hey if one person is having surgery in our house, might as well have 3 people in our house have surgery in 2 weeks!
-We are in full swing getting stuff ready for the Children's Hospital Run/walk!
-Lydia also had a weight check in GI on Tuesday. She was 9lb 10oz. Her nurse comes today so we will see what she weighs on her scale. She still fits in newborn clothes and diapers but is gaining weight each day. She is also smiling more. We have switched her formula again to Elecare to see how that works for her and so far she is having less gas pain! Yeah! Of course Elecare costs even more then Alimentum and exponentially more then regular formula but if it is what is best for her then that is all that matters! I still have not heard any more from GI...
-Last night we took the girls to the festival in Lake Geneva. We were so excited because on the Children's really accurate measuring tool Jilli measured tall enough that she should have been able to go on the rides... however they have their measuring sticks set off at the festival and said she was 2in too short to ride anything (even the marry go round!). Thankfully the fire department was there doing kids activities so Jilli got to do that and then we took her over to the park to swing. Maybe next year she will be tall enough to ride rides. She handled it like a champ though and there was no tears about it.      

Lydia discovered the toys on the top of the mamaroo

Jilli at therapy on Monday. We love New Berlin Therapies in Elkhorn! 

Firefighter Jillian

A Lake Geneva fire fighter helping Jilli spray the hose!

Lydia just chillin

Focus

Often times the best thing to do when you are frustrated with something is to spend time helping others because then you focus less on you. I feel like God has used this past week to continue teaching me about His timing and about not having to be in control of everything but when to move when I need to.

Friday 8/5 we took the girls to the park in Lake Geneva. Brent was trailing after Jilli with her oxygen and I was sitting with Lydia. At our therapy place there was a poster about an inclusive playground they are trying to build in the area. I decided while I was sitting there that I would look up where they were trying to build this playground and figured out that it was the exact park that we were playing at... a park we go to frequently. And as I am sitting there reading about what they are trying to build at this park Jilli fell on the steps and sprains her other ankle. It is getting better day by day but she still has a limp. At therapy on Monday her therapist was really surprised by how bad her walking is looking right now. She thinks some of what we are seeing right now might have to do with her growing... we will see.

Last weekend was rather low key for us. Sunday afternoon we went and visited Dan in the hospital and then went to the zoo.

Monday after therapy we went to pick up Dan from the hospital and bring him home. On my way there I got a message that Jillian's friend Caroline was being admitted into the hospital to have an NG tube placed. I called Caroline's mom Stacy to see if they wanted some company and someone to talk to who has sat in the same place. Until you have helped hold your child down while they stick a tube down their nose it is a hard experience to explain to someone and it rips at your heart in a way that is hard to express so I wanted to be there for Stacy. After I dropped Dan off at his new apartment we headed to Children's to visit. The little girls played. It was funny because we got up to the room shortly after they were admitted so people were walking into the room and there sat 3 kids with medical needs just hanging out with tubes all over the place. After Brent got done at work he picked up dinner for the adults and brought it over. We know how hard it is to get out of the room and get a meal while your kiddo is in the hospital so we treasure when people bring us food when we are in the hospital with the girls and wanted to pass along the kindness. (also the in room food you can have brought to you as a parent has gone down hill massively... TV dinners would taste better)
Monday night our drive home got scary. I was on I43 and just passed over hwy 11 when I came over the bridge and a wrong way driver was stopped facing me on the interstate. I slammed on the breaks as there was a car in the lane next to me. Just then the wrong way driver hit the gas and came towards me. I was able to hit the gas and get into the other lane. It was a really scary quick situation. I called 911 and they had someone on the way already. Brent was a few miles ahead of me driving home and just missed getting hit as well. My poor parents though.. I was on the phone with them when I came over the bridge and I yell "that car is the wrong way" and then the last thing they heard before I hung up was that I needed to call 911. I called my mom back once we were safe and after I talked to 911... my parents were so relived to hear we were safe.
Tuesday morning I was messaging with Stacey and decided we would head up to Children's to bring Caroline some feeding tube supplies (when feeding tube supply companies set you up with the first delivery they don't bring you what you really need... so we brought them so things to help them get started with tube feeding at home) and before we left for the hospital Jilli and I made Caroline a Tubie Friend! I love being part of such an awesome organization. We then headed up to the hospital and the girls played together and I was able to share home tube feeding tips with Stacy. While the nurses are great at teaching the medical parts, there are so many practical home parts of tube feeding that families who do this at home learn. I am so grateful for blogs of other parents with feeding tubes who I have learned so much from. I am also so thankful that through this blog that Stacy and I have met. the girls became such good friends and I am SO thankful for my friendship with Stacy and that we are able to support each other on our kids' medical journeys.
Tuesday afternoon the state fair came to Children's and the girls were able to go down and participate. It was such a great event. The state fair with the heat and animals is not a good place for the girls so this was an amazing opportunity for them. They had such a god time! I am so thankful that Childrens does events like this and I am so thankful for everyone who donates to Children's to help make things like this possible.
Shortly after the fair Caroline was discharged. I am sure we were a sight walking out with 2 strollers, 3 kids, and a wagon and wheelchair full of stuff. We headed back over to the Ronald McDonald house where they were staying. The girls were able to go play in the playroom for a while. We had dinner at the house and then headed home. Thank you to everyone who donates to the Ronald McDonald house or give their time. At the end of a long day of appointments you could tell how much that meal meant to families staying there and for the families it is such a time of community of checking in with people who are going through similar things that you are and holding each other up.
Wednesday we had a calmer day at home.  In the evening I went to a meeting about the inclusive playground in Lake Geneva and Brent had the two girls at home... they gave him a run for his money!
Thursday was oxygen and nurse visit. Lydia is at 9lb 4oz. Friday night Brent went to a movie with friends and I took the two girls to the design meeting for the playground. I love how Jilli will play with anyone. Lydia during the meeting insisted that she needing me standing and rocking her. The meeting ended up going late and after the meeting I needed to get gas and stop at Walgeen's for Jillian's meds. I LOVE our Walgreens! They care so much about us and keep up to date about the girls and always ask how they can help. I am so grateful for them.
Saturday morning I went to the library book sale. In the afternoon we had zoo class. This weekend we also got to spend time with Caroline's whole family. They are back in town for an appointment this week and since they came in early they stayed at a hotel so we meet up with them and the girls got to swim. They had a blast. Lydia also decided to start this morning by puking on her clothes... yummy!

If you read my last post about how frustrated I was about speech and GI... I have an update. Monday morning speech called me and said they had no openings before Lydia's surgery. After some talking they said they would see if there was any way that the speech person who saw us in the hospital could see Lydia out of the hospital. The lady said she would call me back. Brent and I talked and decided that this speech eval is most likely not going to change anything. This child still chokes on her saliva multiple times a day and is still vomiting at least once a week... without eating orally. The nurse that visits our house each week is just as confused about all of this as we are. I took a little time to think before calling GI. I didn't want to react on emotion. I wanted to make sure we were making the best choices for Lydia. I also wanted to search for God's will in the situation. When things start going not as I planned I try to remember to ask what God is wanting me to learn in the situation. I was trying to figure out if there was a reason that God was having us go through these steps... if even if it was no what I wanted if He had a better plan. I don't want to be my biggest barrier in my own life and the lives of my kids.  I often forget to ask God's will in a situation but I try. I'm not positive why we are having to jump through these current hoops but one of the things I think God is using this to teach me is how to advocate for my kids to the best of my ability and how to do that effectively.  By Wednesday afternoon I had not heard back from speech so I called GI. I asked them what the plan was for the upper GI. She said that the girls' GI was on vacation but she talked to a different doctor and they said it could wait until her next tube change out but I pointed out that she does not need a tube change out before surgery if she has surgery on Sep 9. I then told the nurse how Brent and I are feeling about the current situation. That she gained weight because of the calorie differences and how she is still puking and choking and that we are fine to see speech however she currently sees OT for feeding so we know what is going on there and we don't think a speech eval is going to change her need for this surgery so if they can't get her in before Sep 9 that we still want to do surgery when it is scheduled and worry about the speech later. She said that she will talk to our dr about it when she gets back in town. We will see what the dr has to say. About two hours later I got a call from speech that there now is an opening before surgery... hmmm. At least it is getting done before surgery. I don't think it will change anything but at least we will have jumped through their hoop! I just want to do what is best for my kids!

Jilli reading to her sister

Jilli at the park with her cooling vest on

Jilli at Veterans park right before she fell

Jilli shortly after her fall

My girls

Jilli in flamingos

Jilli and Caroline

Three tubies (and none of them looking at the camera)

Jilli helping me make a Tubie Friend

Caroline's Tubie Friend (I don't know why Jilli connected the NG to the G)

The girls playing playdough

Jilli at the fair

Why is it that someone else's toys are always cooler

Jilli playing at Ronald McDonald house

my smiley monkey

Jilli giving her sister her bear

Lydia loves this toy! Gotta love a rummage sale find!

My sweetie!

She is starting to fill out her newborn clothes!

Jilli at zoo class

headed to the pool

Lydia;s first time in the pool!

family pool time!

The girls liked the pool and we had fun with friends!

Miss Lydia right before she vomited all over this outfit

Just chillin!

the 3yr old thinks the 8wk old's toys are very cool

Jilli was a ballerina