Big Girl Bed

Well, its official, my little girl is sleeping in a big girl bed!

My parents got Jilli a toddler bed for her birthday after months of her saying she wanted a princess bed. Of course my child picked out a bed at Babies R Us that is more then our car payment, but we talked some reason into her and compromised for a bed that was still princess but but at a much better price :)

We have had her bed since mid December, however there were some things that needed to get done before I was ready to put it up. I never planned on being a parent that room shared (we have a nursery that is still set up, just now used as the piling grounds for baby gear we are not currently using) but with all of Jillian's medical stuff it is much easier to room share. Honestly if she was in a different room I am not sure that Brent and I would wake up to her pump at 2am. There are also plenty of nights were I lay and listen to her breath. There are many nights that her breathing has woken me up, and I would not want her in the other room and miss when she started to struggle to breath (esp since we don't have a nice pulse ox machine). The baby will also be in our room with us, at least for a while (I like as little effort needed as possible for middle of the night feedings). I wanted to re-arrange our room before we added another bed to it, but I also wanted to not just move the furniture around but also deep clean the room. We worked on it a little bit here and a little bit there (removed 4 trash bags of clothing out of the closets) and a couple of weeks ago I moved furniture (yes I was dumb one day while Brent was at work and moved everything by myself, I payed for that choice in pain for days, Brent was not very happy that I did not wait for his help) The past couple of weeks has been a lot of running around and frankly I have been rather tired. I am still wondering when this second trimester energy is coming (maybe I used all of it moving furniture) and when eating is going to sound interesting again.

So on Monday morning I got a slight wind of energy and figured I should probably do something with it before it ran away. Jilli and I decided to work on building her big girl bed. Building stuff like this is not really a big deal to me, I use to build demos at the toy store all of the time. I have assembled my fair share of Melissa and Doug and KidKraft products. It is a little bit more interesting building with a 3 year old but she is a pretty good helper and rather interested. Only two mishapps where she opened the package of silicone beads all over the floor and scratched the bed with a wrench, but I think overall it went rather smoothly. We built the frame of the bed in the morning and then the headboard in the afternoon. She had PT so that was our break in the middle (it was one of those days though were actually getting out the door to therapy was interesting with a waterfall of formula coming off the couch, drenched clothing, nurse calling, van door not working and our street temporally closed, but we made it there)

Monday night we had Jaime, Jason and Emerson over for dinner and as they were getting ready to leave Jillian started climbing the stairs (without getting her med first) to go to her princess bed. Brent brought her up and she climbed right in. Lately she has been insisting on cuddling and watching Full House before bed but that night she was too excited for her big girl bed. She told us goodnight and cuddled up with her blanket. No tears, no trying to get out of bed. Ok, no tears from her, Brent and I were trying to keep ourselves together. She slept all night in her bed and in the morning just laid there until I came in the room and told her she could get up (we have been talking about what you do in a big girl bed for months now so she knew she had to have permission to get up)

Last night I was not home for bedtime (which is super rare but I was at a meeting for her therapy place) so Brent put her to bed and by the time I walked in she was already asleep. I woke up around 5:30 this morning to her calling out "daddy." At first I thought she was dreaming but then I looked over at her and realized she was sitting up (still in her bed). I went over and tried to tuck her back in but the tears started to flow that there were monsters in the room. We talked about how at the end of Monsters Inc the monsters are all funny and she started to laugh (last night she slept with her Boo doll from Monsters Inc and Roo from Winnie the Pooh). At this point though she was very awake. She has been rather whiny today and we decided to just have a pajama day. Somedays are just like that. Sadly I was slightly hopeful that waking up so early would mean a nap today but I am just not that lucky, this child rarely naps. She has laid on the couch a couple of times though.


We are still waiting to hear anything more from genetics. The meeting I was in last night, the other moms were talking about how you call someone regarding something medical for your child and them getting back to you "soon" ranges anywhere from the next day to a month later. My expectations have really had to shift about people calling me back over the past few years. Its not that it does not still drive me crazy, but I have had to learn to accept it. Calling and bugging them is just going to make them annoyed and not get you an answer any sooner so it is just best to wait it out and if the wait gets crazy long you call with a reminder, but timelines on things are very different when dealing with medical stuff. I am just hopeful they let me know soon when the appointment will be.

The end of the week

Sigh... not a bad sigh, but a sigh of we made it. A sigh with a smile.

I feel like this week I have had to fight for my kid in ways that I have not had to in a while. Most of the time, life is just what it is. Most days don't feel like a fight, they are our normal, but this week has felt like a fight. A fight for information. A fight to figure out who can help. A fight to figure out the next steps to figure out if "this" is what is going on so that we can best help our child. I think the last time we had to fight like this was when we knew Jillian needed oxygen last year but the process was super slow.
I was talking to a friend yesterday about the balance of the fight. You want doctors to listen to you, but you also need them to help you. You don't want to piss anyone off, or they are less likely to help. You have to be assertive, without being a jerk. Kind, but get business done. You have to learn the personalities of different people. Just like you have to change how you phrase things when you talk to different people, the same holds true when talking to medical professionals. I have the gift that over the last three years I have been able to form relationships with many of the people we work with, and most of them are very positive relationships. One of the hard things of this week has been that I don't have a strong relationship with either genetics department or with neuro in Madison. Its not to say that I don't like them, but it is different when you know someone. Like our old GI nurse Lisa knew I was only calling her about a problem if I had exhausted all other options myself, but not all of the medical professionals that we work with know me that well. I always want to do my best to create good relationships with others because I strongly feel like that will get us the farthest. I feel like this week has been kind of like a dance of when to call who and how far do I push (I have had three medical professionals that know me well ask how I was not just loosing it at this point). A lot of times when a medical professional can't help in a situation it is not their fault, and its hard not to get mad. Like when I talked to genetics in Madison yesterday, the woman was very nice, and did not say anything mean, she just told me the facts that they don't do anything about "this" there until a child is older... I felt kinda crushed and mad, but in no way was it her fault and getting mad at her or yelling at her would not help anything, or would it be fair to her. At the end of every day I want to be able to say I treated others with respect.

One of my fears about sharing when we are going through a tough time with Jillian's health stuff is that I wont convey the joy we still feel. Sometimes I worry that when people see me upset that they think that I have given up hope, which is far from the truth. I am always hopeful, but sometimes my hopes might look a little different. In in the stress and the crazy, our lives are still full of joy. God blessed us with one AMAZING little girl (and another one that is getting bigger by the day). Even on hard days there is still joy. Even in the midst of tears there are still smiles. She is worth the fight. She has taught me things about myself that I did not know. God is doing great things in the midst of it all, so even in hard days when I am upset, and I am working on learning that it is ok to express that I'm upset sometimes, there is still joy.   

I am VERY excited that we are being referred to a clinic at Children's in Milwaukee that works just with kids who have "this." I am very hopeful that they will be able to help us. It feels like we are moving in the right direction, and after wondering around for three years it feels really good to have a direction to be headed. I'm still trying not get totally get my hopes up, but still hopeful. They did tell us that we are added to the triage list to get us into the clinic but they said there might be kind of a wait and they were not sure how long the wait is to get into the clinic. At this point, when our other option was waiting 7 more years, a couple of months does not feel nearly as long... but I'm still hopeful it is soon :)

Today I was on a page that is for special needs support. I was looking at their pictures of sayings and memes. Some of them made me smile, some of them I shared just with Brent, and some of them made me cringe a little. The ones that made me cringe were because they made it out to sound like special needs parenting is the hardest thing in the world and no one else could possibly understand. I will agree that it is hard to understand something you have never experienced, but saying that one thing is harder then all other things dismisses the feelings that other people are having. EVERYONE has hard things in their life. Everyone has things that might be hard for them but easy for someone else. Everyone is different. Just because my hard is different then yours does not make yours less hard for you. Everyone has things they are working through. Yes some "hards" are more socially acceptable then others, but that does not invalidate that something is still hard to deal with. I try to remind myself (I am no where near perfect at this) that when someone does not react or do something the way that I want that we are all going through different things. Everyone has challenges in their life.  Don't beat yourself up because you find something to be hard, reach out to others, find a support system, and do a little dance in the rain, but just because something is hard, does not mean you need to be miserable. Allow yourself to have emotions... that includes both joy and sadness. This world is an even better place when we love those around us during whatever they are going through, maybe you will even learn a few lessons along the way.

This one I did like :)

Where are we right now

Jillian's doctor and I discussed how we are on a medical merry-go-round right now!

So last Wednesday we met with neurology in Madison. He told us after a long exam what he is almost positive he knows what Jillian's overarching diagnosis, however that even though he has seen "this" before he can not make the official diagnosis because "this" does not fall under the neurology umbrella. He told us to contact Jillian's pediatrician to see what we need to do next. I sent her a message last Wednesday night once we got home from neurology, however she only works on Monday and Wednesday so I had to wait. Monday afternoon her nurse called me and said that the doctor wanted to talk to her husband who is also a doctor to see what we should do next and then she would call me on Wednesday. Her pediatrician and I talked yesterday afternoon and she said that she feels like we are going in circles. I told her I really agree. Jillian's ped did not disagree with the neurologists thoughts but said that we need to see someone else for the official diagnosis. We were then trying to figure out the best person to see for the official call. We decided that genetics is probably the best place to go back to, since "this" has a genetic component however there are multiple lines of "this" and only a couple of them are genome sequence so that would make sense why it did not come up on her exome sequencing (there is no blood test, it is clinically diagnosed).
I decided that since we are established genetics patients in both Milwaukee and Madison that I would just contact both of them. Honestly I felt a little bit like I was throwing spaghetti at the wall and waiting to see what stuck. Madison genetics called me first thing this morning (thank you!) and said that they looked at the note from the neurologist and while "this" is likely in their clinic they will not make the official call for "this" until a child is 10 or 11 years old and the daily joint pain part of it starts. She said she will talk to the geneticist but she has a feeling he is still going to say to come back in one to two years! Ugh!
I have not heard back from Milwaukee yet...

As a friend put it last night, it is like we have been given a glimpse of what is going on. Right now I feel a little bit like we are running in a maze. Our life tends to go in these spurts, were it is just our everyday in and out, doctors appointments, therapies and medical equipment are normal in our world. Most days I dont give it all much thought, but then there are times like this were we are on a high speed chase. These times of searching don't typically last long, but it is a whirlwind in the middle.

I am not ready to let out what "this" is yet. I don't want to have to explain it and then say they changed their minds, honestly that would suck and I am afraid of confusing people (it is not anything we had though of before). I will state that if "this" is it, there is no cure, no treatment. It is considered to be a rare disorder (a disorder is considered rare when less then 200,000 people in the US have it)  It does not change most of our day to day life right now, however there are some different precautions we would need to take, some choices we would need to make as she gets older and it has some things that we need to watch for. It would mean that how her organs function right now, might be the best they function and we could see them get worse but at no predictable rate. The hard thing with "this" is that it is a continuum, some people are only effected by it mildly, other people have organ involvement the deteriorates over time and other complications. So far Jillian's neurologist, her pediatrician and her therapist all agree that "this" is logical, but we need genetics to make the official call. Also, if "this" is it there is a 50% chance the baby will have "this" as well however only time will tell since there is no blood test for "this" and if the baby does have "this" we have no idea where she will fall on the continuum.

I want to know answers. I want to know if "this" is for sure it. I have spent a ton of time researching and reading this past week. "This" makes a TON of sense but we need genetics to make the call. This week has been rather emotional digging through the layers of "this" and figuring out what it entails. I have spent time reading blogs of other people effected by "this" because honestly that tells me a lot more then the paragraph several medical sites have about it. I want to be educated about "this" so I can have informed conversations with Jillian's doctors.

I want to thank the people who have been praying for us. We could really use prayers right now... I really don't want this to take another 7 years to diagnose. Thank you to the people who have been texting and e-mailing with me this week to keep track of how things are going and offer support. My emotions are on high right now and I am every thankful for people who have lovingly come next to us and did not make us feel bad for having emotions through all of this. The road to getting a diagnosis for your child is scary and for some people they come to a diagnosis quickly, others of us are on the road for a while, and while most days being on that road starts to feel "normal" there are times like this past week where it feels like we are driving on icy roads. Everyone has "stuff" in their lives and this is just part of ours and I just want to thank the people who love us through our stuff.         

Jilli cuddling in bed with me. This is her favorite part of the day (and one of mine too) we curl up in bed together and watch Full House. She has "You got it dude" down!

Therapy is exhausting. This was her most of Monday afternoon/evening

Daddy reading Jillian her book. He had Monday off for Presidents day so we got to spend some family time together.

Jilli reading her Daniel Tigger book... the little girl in the book has leg braces (if "this" is it she will likely need leg braces as she gets older)

She peed on her clothes on Saturday and decided this was what she needed to wear to dinner

My dad dug out my little brother's workbench. She loves it!

Her size matters not shirt. She kept telling me she likes Yoda cause he is a good friend (she she thinks he wears a tutu)

Feeding Tube Awareness Week 2016- Day 6

Today's Topic:
Make a plan to educate 5 friends, family members, or media sources about tube feeding.

Playing princess candy land with my girl yesterday!

I have said from the start that there are a few key reasons why I blog:
1. It is easier to write everything down once and have our family and friends read it then to try to remember all the details to re-tell it over and over. It is not that I mind talking to people about it, infact I have spent my last two days talking about it all with a few people both for comfort and advice, but honestly there is a lot to remember and to try to tell everyone individually all the details would be exhausting and then I would forget to tell someone something and they would be mad and I would feel bad. I have had a few people get mad at me when I forgot to tell them something I had blogged about and then I remind them that both my mom and my husband have read stuff on here that I have totally forgotten to tell them about not because I was trying to be mean, but my head is full.
2. It is a good way to keep records. When genetics sends me a huge packet they want filled out and they want to know all sorts of little details it makes it a lot easier to just go back and look at old posts, It helps me keep track of patterns in her health. It is also a good way to look back and see things to be thankful for, both things that we made it through and happy times.
3. Its therapeutic. Its good to not hold everything in. Sometimes just getting out there what is going on helps me to process it.
4. To spread awareness. If you have never had something impact your life then there is no way to know about it. As humans we relate to real life. Something matters to us more if we know a real person with it, if we can put a face to it. Being a special ed teacher I have read about a lot of disorders and different needs, but it impacts me more when I have a student that has those needs. When most people think of tube feeding they think of elderly people in hospice, they don't think about 3 year olds living outside of the hospital. 
5. To help others. When we started this journey 3 years ago the best resources I found were blogs of other parents. Doctors can tell you the medical side of things, but they don't know how to bathe a child with a feeding tube because they have never had to figure out the logistics of it (nothing against them, but when you have not done something for yourself it is hard to explain to others). I was so grateful for parent blogs in those early days (and still am) because it was someone I could relate to and learn from. Part of why I blog is to give back to the tube feeding community so that maybe I can help some parents like other parents helped me.

I hope this blog has touched you in some way over the past 3 years, by either teaching you more about life with a medically complex child or by offering you support in know you are not alone. I don't blog for recognition or attention, that would not help anyone, but I really hope all of this writing has helped others along the way.

My goal for feeding tube awareness week is to show what life is like with a kiddo with a feeding tube. To show that it is not a scary thing, but it is hard.

If there is still a question that you have about feeding tubes or our journey, I have one blog post left tomorrow for feeding tube awareness week and would be happy to answer any questions I can. Either leave your questions in the comments or if we are facebook friends you can send them to me that way.

Jillian gets two of her meds orally... she LOVES them! Most kids ask for breakfast in the morning when they wake up, Jillian asks for meds

This is what Jillian's feeding tube looks like with the J extension in. She is fed into the j port and the g port is drained overnight. We keep a pad on it because it is a hole in the body so sometimes there is some fluid that comes out (most of the time around her g tube looks amazing). We tape her GJ tube to keep it from spinning. 

Feeding Tube Awareness Week 2016- Day 5

Today's Topic:
It can be a challenge when family members or friends do not understand why you or your child needs a feeding tube. However, many family members do a great job of supporting their loved one. Encourage your family to learn about tube feeding, lend their support, and share their story.

I remember the stress I felt as a new mom in those early days of tube feeding where I was trying to explain to people that eating for Jillian just was not a safe option. Some people jumped right and and asked how they could help, other people made very hurtful comments. Those early days were rather overwhelming and to be honest we were just living in survival mode. I can't even start to explain how much it meant to us when people would come see us in the hospital and bring us food. We had family call the hospital and buy us meal tickets so we did not have to worry about eating.
In every situation there are going to be people who react differently. Over the last 3 years we have had relationships that have grown, both with people who we have known for a long time and with people we have met in the past three years. I am truly blessed to have our support system. People who cry with me when I have cried and danced with us in the happy moments (like the people I have spent time talking to since our appointment yesterday who want to figure out all they can to help us figure out what is going on and have listened to me in my really odd emotions at the moment). We have had friends that have spent time figuring out Jillian's stuff and can explain to others why Jillian needs a feeding tube and help us in looking for answers. We have people who join us each year in raising money and walking for our children's hospital. We have also had relationships that have taken hard hits over the past three years when people were either bothered by Jillian's stuff or did not understand when we can't do everything they want from us because we were busy with Jillian. Our goal is to educate people about Jillian's needs but I never want to shove it down someone's throat, especially if it makes someone uncomfortable.
I want to thank everyone who has come along and loved us during the last three years. It has been a quite the journey. This would all be a lot harder if it were not for some of you. Thank you to the people who silently lift us up in prayers. I have heard stories of people praying for us that I had no idea even knew our story. I can't even explain how much it means to me when I hear that people are praying for us... thank you!

On a side note (if you have not read yesterday's post read that first and then this will make more sense):
Today I just feel like my head is swirling. We have a possible diagnosis but it is not confirmed. I have sent a message to Jillian's ped to figure out what dr we need to see next, however she only works on Mondays and Wednesdays and we were at the dr in Madison until 5pm yesterday (we had a 2:45 app so it ended up being a long afternoon with the hour and a half drive each way) so I will most likely have to wait until Monday to hear anything more. I feel like we are in limbo right now. I am trying to learn as much as I can so I can ask good questions. There is also a part that just seams surreal that we might have a diagnosis. I promise I will share more once I have details and know for sure what is going on. 

Jilli doing school work this morning (I had done the square as an example). She begs to do school work. It has been a busy week of doctors so I think she was really craving some normal at home time today. She loves working on school work and can identify some of her letters at this point. 

Oh that hair! She had a bath last night and went to bed with damp hair and this is what it looked like this morning! She loved playing play-dough though and she is very happy when mommy agreed to it being a jammy day (although I did change into yoga pants because I really don't need the oxygen guy giving me funny looks for Mickey Mouse pajamas! He has a enough to make a face about with the house being a mess today and I frankly am just too worn out from the week to do too much about it today)

Feeding Tube Awareness Week 2016- Day 4

Today's Topic:
What has tube feeding meant for you or your child? How have they grown, developed, thrived? What are they able to do because they are powered by tube feeding? ​

Tube feeding has meant living. Before Jillian's feeding tube she was so tiny and puking all the time. She was falling behind on her developmental milestones because she was using all of her energy to try to eat. Tube feeding has meant getting nutrition the best way for her so that her body does not have to use up so much energy trying to eat. It also means that there is less stomach contents ending up in her lungs which helps her lungs. I don't even want to think about where we would be if it were not for her feeding tube.
Jillian is able to live because of her feeding tube!


On a side note, we got to see a neurologist in Madison today. I really liked this doctor. He went over Jillian's muscle biopsy results in a way that no one had before, which I really appreciated (I don't want the cliff notes version of what it said, I want to know the details so I can best help my kid). He thinks he has an idea of what Jillian has however he did not make an official diagnosis because what he thinks it is does not fall under the neurology umbrella. We have contacted Jillian's ped to figure out the next steps. Once I know more I will share more, but I want an official diagnosis before I put it out there, but I am really hopeful that we are pointed in the right direction. I have spent my night reading all that I can about it and it does look like this might be the missing piece. I am hopeful we can get into who we need to quickly so we can confirm it. I am very grateful for the doctor we met with today, he was very through and asked questions we had not thought about before and noticed things about Jillian that no one else had picked up on before. Right now I am just trying not to get my hopes up too much that we figured this out until we have the official diagnosis (also if this is it, it does not come with a "cure" but it would at least give us a name for it)

Jilli decided to put on my pajama pants tonight

    

Feeding Tube Awareness week 2016- Day 3 and doctors appointments

This is going to be a combined post between the feeding tube awareness stuff and our day of doctors

Today's Topic:
There are long-term consequences to malnutrition. For some people, there wouldn’t be life without tube feeding, but for others they would continually struggle with malnutrition. Tube feeding makes it possible for people who aren’t able to eat enough on their own to get the nutrition they need.


Jillian was born at 8lb 11oz... and she quickly started loosing weight. She quickly lost a pound. When you puke all of the time it is really hard to gain weight. When she was 2 1/2 months old she was diagnosed a failure to thrive (she still carries this diagnosis because if you removed her tube she would fail to thrive). When she was 3 months old she was admitted into the hospital with a respiratory virus and at that point she was only around 9lb (this was with her eating every 2 hours around the clock with fortified milk). We could not leave the hospital until she could gain weight and even with feeding her every 2 hr we could not get her to gain because she was puking so much. This is when Jillian got her first feeding tube. She was fed via an NG tube from 10pm to 6am and bottles every 2 hr during the day. While she did put a little weight on she was still puking and choking all of the time and she was switched to a NJ tube. With the NJ tube we really started to see weight gain, to the point we had to lessen how many calories her milk was fortified to. Once switching to the NJ tube was also started to see her hitting milestones that she was behind in (she did not roll over for the first time until she was 6mo old) Jillian is still really small for her age. Last year she really did not gain any weight at all, however once she started on oxygen her weight gain started again. She still sits between the 5th-10th percentiles for height and weight but thankfully she is no longer loosing. Without a feeding tube Jillian would not be able to get the nutrition that she needs to live.



Our day:
We started off with my OB appointment. I have gained a little weight which is good (and was noticeable when I tried to put on my Tubie Friends shirt today and it sat at my belly button!) We had a really good conversation about delivery. See with Jillian I started having contractions at 28 weeks, however I never dilated. Once my water broke at 39 weeks (on its own) all contractions stopped (these had been timeable, intense contractions, to the point my doctor told me she had no idea when to tell me to go to the hospital and to pray my water broke because for 10 weeks I had daily contractions about 2min apart and this would last for up to 6 hours at a time) and they ended up giving me drugs to get labor started, however even with drugs my labor never really progressed and 24 hours after my water broke I ended up having an emergency c-section. Based on my history we decided that a c-section will probably be the best plan (my doctor is very pro v-back, I know a lot of people who have this OB and I am the only one that I know who has needed a c-section, she is very much pushes that she wants your labor to be how you want it, so I know talking with her and friends of mine that she is not a dr who is going to suggest a c-section if its not the best thing for you and the baby). We also talked about contractions because they have already started and there have been a few nights were I have not been able to get off the couch because they were for frequent and painful. There is not much that we can do about them, it is part of how my body handles pregnancy, but she suggested lots of water and rest when contractions start.
We then headed to neuro at Children's in Milwaukee. The appointment went really well. They looked at her muscle biopsy stuff and agreed that stuff did not look right but they were not positive what it shows. They are sending us for a consult with a neuro-muscular doctor at Fredoert. I am really hopeful that this is the doctor that will be able to help us. I still really think whatever is going on has a muscle base and we really need a muscle doctor, however Children's does not currently have one (they are getting one in August) but I am thankful that we are getting this opportunity to see this doctor even if he is more adult based. They are also sending us back to audiology to get her hearing re-tested (I am hopeful we get an audiologist that does not think Jillian is uncoperative even when she is perfectly behaved)
Then we headed to rehab clinic. I really like rehab clinic. They kind of look at everything we are doing and help us with equipment and send us to doctors we might not have thought about. They said we are doing everything we should be doing right now. She asked me how I am not incredibly frustrated that we don't have answers yet. I told her that I am but we just keep chugging along. We talked about Jillian's neuro-psych eval and she agreed with the test scores but she also agreed that the way the guy worded some of the stuff was rude and she was offended (the guy claimed I was uncooperative in answering questions about Jillian's self eating skills, she does not eat, I am not sure what else you want me to say about her self eating skills). She said to come back in a year or when we wanted to order Jillian's wheelchair. She said it is up to us when we feel like she has outgrown her stroller or when we want her to be able to do things at her level  when we are out and about and feel that its the right time to transition her to a wheelchair when we are out of the house. Insurance will only pay for a chair every 3-5 years so we want to wait until she is a little larger so that the wheelchair will last her longer, so right now we will probably start the process of ordering her wheelchair in a year. Jillian ended up sleeping through the rehab appointment. Having a fun weekend takes a lot out of her and it takes her several days to bounce back. That is the part that most people don't see. They will see Jillian playing for a little bit but they don't see how her playing effects her energy for days. We have to weight every activity she does based on how much energy it will take out of her and how long it will take for her to recover. It is a balancing act.

So that was our crazy busy day, but I feel like it was really productive!    

Flushing with water between meds

 

Jillian reading a book to Emerson last night

Hanging out while mommy at lunch

Sleeping during rehab clinic

We got the baby swing out last night for Emerson to use. When I looked at the swing today I noticed there were three princesses in it. I have a feeling this is going to happen a lot in a few months.

Feeding Tube Awareness Week 2016- Day 2

Today's topic:
Post your story or pictures of you or your child thriving with energy as a result of tube feeding. Or, post before and after pictures to show how much tube feeding has improved you or your child's energy.


Wow, there are so many ways that Jillian's tube has improved her energy. Before Jillian's tube she barely had the energy to eat. I would nurse her and then give her a bottle of breast milk so she could get easy calories in because it was just too much work for her to eat. Then once we would get the calories in her, most of the food would come back out. This led to a very unhappy baby. Without a feeding tube Jillian was not gaining weight. We even tried adding formula to breast milk to make it higher in calories, but that just got puked out too. When you don't get enough calories in you get very tired and cranky. 

Jillian's feeding tube has made it so she is able to grow and do the things she wants to do. It also makes it so she does not have pneumonia all of the time. She already struggles with her lungs but breathing is even harder when your lungs are being filled with food. 

Here is some pictures of Jillian just getting to be Jillian because of her tube:

Being goofy with mommy!

Doing yoga

Playing with her toys

Getting excited about being a big sister (she talks about her little sister every day! She kept telling us this weekend all of the things she wanted to take her sister to do in the Dells)

Playing basketball

Coloring (Jillian is very good at entertaining herself while we eat!)

Playing at chilren's museums

Decorating for Christmas

Playing at the playground

learning how to climb the stairs

playing with friends

Playing games

Being a princess

Riding her tricycle

Driving her car

Going to the park

Participating in zoo class

Going mini golfing

  Too many people think that having a feeding tube is no way to have a life... I challenge that thinking, having a feeding tube has given Jillian the opportunity to have a very full life!