Its a GI problem

Today Jillian and I went up to Children's clinic on Moorland road to visit a feeding therapist for an evaluation. She had not had a feeding evaluation since she was inpatient in April so it was time to look at it again.

When we first went in we went over the Jilli health history. She looked exhausted just hearing it :) Then we talked about what Jillian does for taking food by mouth (1 bottle once a day of 15ml breast milk). She said she wanted to see how Jillian did with a spoon and with breast milk on a spoon.
Before we started with the spoon the therapist first tried with putting her fingers in Jillian's mouth. She was receptive to it. She felt around her mouth a few times and tried a few different things. She said that her oral motor skills looked good for never having finger food in her mouth. The only thing she did not do was move her tongue to the side of her moth that the finger was on, instead she always left it in the middle of her mouth. She said that was not a big deal though because currently Jillian had never needed to use that skill so her not doing it was not surprising.She said this showed Jillian was not ready for any finger foods like puffs.
 I had brought with one of the spoons that we have at home that she plays with while we eat dinner. The therapist put 5ml of milk in a cup that she spooned out to give to Jilli. At first she did an amazing job of eating the milk off of the spoon. She would put her top lip down and take it like she had always been eating that way. The therapist was really impressed.
Then She mixed a little bit of rice cereal with 10ml of milk. Jillian took this off of the spoon nicely too. She became less coordinated with it as she went on but for her first time spoon eating she did great. The therapist said she was really impressed and was not expecting that at all. Also as eating went on she went farther and farther between bites and would put her passy in between bites, which is Jillian's signal that it hurt, but she kept on trying her best. After she finished eating we let her sit in the high chair and we worked on updating things about her eating into the computer. This is when Jillian started to have a hard time. She started to reflux about 3 minutes after she finished eating. She was sucking that passy 100 sucks a minute, her arms and legs became stiff, she was bright red and she would intermittently yell out. It would be bad for a few minutes at a time and then she would calm again. She was trying to rip off her bib so we took it off for her and let her hold it. She wrestled with the bib like it had just tried to steal something from her. You could her hear refluxing, gulping, and her vocal cords sounded horse. Her breathing became more labored and varied from fast to slow. 
After about 20 minutes we decided it was time to show off her bottle skills. She spit out her passy like she is suppose to when I brought the bottle to her. She would not hold it but did a great job drinking it, in about 45seconds, which is a normal time for 15ml of milk. After the bottle was over I sat her up. After about a minute she started to reflux. It was like trying to hold an unhappy monkey. She was all over the place and very hard to hold because she was trying to get comfortable. She was sucking on her passy a lot, making swallowing sounds, and throwing her head back. From they was she looked at times you would have thought the ceiling was very interesting.
The therapist and I then talked. She said it pains her to see how much pain Jillian is in when she eats. That she has great oral motor skills and defiantly does not have an oral aversion. She then said she was unsure of the next steps. That a part of her almost said to not have Jillian eat by mouth anymore because she was worried that one of these days an oral aversion would form. That was the eating by mouth worth it? That because she has such great foundational skills that if she was able to eat later on without pain that it would be a lot easier to regain these skills since she already has them, then to fix an aversion problem. We decided that since for right now she is still willingly taking the food that we would keep going with it. We decided that we would try spoon feeding her 5ml of plain milk and then 10ml of the milk mixed with rice cereal for the next week to see if it made any difference. It did not in clinic today (it was almost a worse reaction) but that we would try it. She suggested staying with the 15ml because that is what has worked and we don't want to up the volume and change the form at the same time because then how will we know what went wrong if something goes wrong.
We also decided that staying with the stage 1 bottle nipples were best because she is sucking them perfectly and we don't want to mess with something that is working. She said that for now it is best to stay with just the milk and not add other things (except the rice), especially if we might be taking food away if she starts to struggle with the pain more and because we dont know of any possible allergies and we don't want to add problems. She said that Jillian is not a kid that we would be working on taking the passy away from anytime soon because it is a coping method and is helping her in dealing with the pain and in keeping oral motor skills.
She said that we did not need to come and see her again anytime soon but she is a resource for us and is here to help us in any way. She said to let her know how the next week with the rice goes. She said she would put a call into the GI about the visit.

Overall today would be a middle of the road reflux day. By no means was it her worse, but it showed them what a little taste of Jillian's tummy troubles where like. 

After we finished Jillian and I went across the street to Target to buy rice cereal. While we were there she was not her normal talkative smiley self. She just sat there, dazed.
Once we got home I changed her diaper. She had pooped out of it. She is not pooping out a lot right now but it is coming out with some force behind it causing most of it to be out of the diaper instead of in. While I was cleaning her up I noticed the inside of her g tube looked nasty (its clear) and I had just flushed it with clean water this morning. I hooked up a syringe and vented out 8ml of tummy contents. There looked to be some grains of rice cereal still in there from 11:30 and it was now 2pm. Yummy! I then flushed her with 3ml of clean water. She has been kind off all afternoon. She has been throwing herself around and not wanting to play. She has been having episodes of reflux too.
Also while I was changing her I noticed that her rash is coming back. It is looking better again this afternoon. I'm not sure what these little bumps are. Maybe just another mystery of Jillian. Hmmm....

Bumpity bump bump

Hello rash. We are not sure why you came to visit Jillian. We are not positive what you are, but we know we don't want you staying around. 

Saturday: 

Sunday: 

It is not as bright red but it looks more painful because the large patches just look raw and like they are opening. 

We took her to the walk in yesterday. They said that it is a nonspecific rash... She does have an ear infection that they put her on antibiotics for. They said her throat looked red but tested negative for strep. They also prescribed Zyrtec incase it was an allergic reaction. 

Brent went to pick yup her prescriptions they said they could not fill the Zyrtec because she was too young. The pharmacist called the dr and they agreed on Benadryl in a small dose with the agreement we would be very careful giving it to her. Allergy meds are not to be given to kids before 2 because of some bad side effects that could happen. We are to only give her a little to see if it works. 

You can tell it itches her badly.Dispite  the rash on her abdomin her diaper rash is looking better. We are still putting yeast infection cream on it. 

You can tell she is not feeling great today. She fought a nap until after 3. She has been coughing a lot. While drinking her bottle tonight she kept gasping for air and refused to finish it. However if you were to meet Jillian for the first time today you would think she was fine. She is still pretty happy (not as smily) and kind of clingy. But she takes everything in stride. She is one strong girl! Our little fighter!

blood at site, more puke, mood changer, new pump and croup

Blood at site:

neb on the left, feeding pump on the right

Monday night Jaime and Jason came over for our weekly dinner. After the boys finished watching Men's Fraternity and us girl had chatted (Jilli played with her shadows on the wall and played with bubble wrap) we got back together and had yummy strawberry shortcake! We utilized the extra hands to help with changing her pad and cleaning her tube site. When Brent was wiping around her site some blood came out. Just a little. We are going to watch it...

Mood Changer:
Monday night I fed Jillian her bottle late. She was having such a good time playing I did not want to disrupt that. Around 8:30 I figured it was time... I gave her the bottle, which she played with, so I took it away after 10ml because she was getting so much air in and I had restarted the feed multiple times. Within a few minutes she started getting all wiggly and arching her back and no longer smiley. It was a 180 flip. Jaime was commenting how crazy different she was within a few minutes of eating! Eating just a little bit makes her so uncomfortable and it is hard to hold her because she throws herself all over! Oh baby girl.

Yellow puke... I know it looks like pee

More puke:
Monday we got to experience more puke. Yellow highlighter puke.

New Pump:
Jillian got her new pump Friday but we were instructed to not use it until the nurse from med supply came to teach me how to use it. Monday I read the instruction manual and figured a few things out. I also read a few blogs/websites about the pump. It is a little different then her other pump, but not too much. It is so light compared to her old one. So far I am liking it!

Croup:

At the Walk in Clinic

Since Friday night Jillian has had a cough. Sunday she started puking yellow. Yesterday she slept most of the day. I decided to take her to the walk in today just to make sure it was all ok. I figured it was just allergies and I did not want to over react. It it the mom balance.
We got to the walk in around 11am. We waited in the waiting room for a while and Jillian made a little girl smile. We were called back to triage and they weighed her (20lb) and measured her (50th percentile) and then we tried to get her pulse ox. It took 10min to get it to read over 95... We got it up to 97... but most of the time it was hanging out in the low 90s.
We then went into an exam room. The PA came in Jilli was sleeping. She did most of her exam without Jillian flinching. That is so not my 15min napper! I showed the PA the picture of her puke on my phone and video that I took of her cough during the night. Jilli kept falling back to sleep. The PA also looked at Jillian's tube site and said that it looked good, we had it secured well and there did not look to be any infection! Yeah!
She then sent her for a chest x-ray. They had a hard time getting the right angle. We then went back to the room. After a while the PA came back and said that Jillian has croup and we needed to start her on a nebulizer and steroids. She said they were working on finding a neb for her since my neb only has the adult part and not the kid mask. They left to find one.

Getting a nebulizer treatment

Carley the dietitian called while we were waiting and said she got my message last week and had lost my note and just found it on her desk. I have so done this! She asked how Jilli was and I told her we were in the walk-in with croup. She said that she was not going to change anything while she is sick and will see us next week.
The nurse then came in with a nebulizer and a packet about the visiting nurses. I said that the VNA had been at our house that morning. She looked at Jilli (hooked up to her backpack) and laughed and said she was sure they were. lol!
We then headed to the Walmar
t Pharmacy to pick up her neb meds and steroids. It took forever to get the meds (over an hr and a half) but our favorite pharmacist was there and we talked quick about each of our tubies.
We headed home and I put on a Disney Sing Along Songs movie and tried doing Jilli's neb in her chair but she was at an odd angle for it so I held her. It was a scream fest. We cuddled and she slept.
My cousins Jake and Dustin came over for dinner and Brent and Jake build Jake's new computer. Jillian liked the boys. I taught Brent how to hook up her new pump, he gave her a neb and then the boys left.

cuddling with mommy

We have done one more neb since. It is breaking up junk in my lungs too. Sometimes I forget that my lungs suck until I do something that make them work better. I just live in a state of them not working as good as they should, and I bet most people would seek medical treatment if they felt them all the time, but to me it is normal. I guess we each have our own normal :)
I was going to call and get her the next shot she needs but not while she is sick. She is ending up really behind with this one... Osp! She has to not be recovering from something though for her to get it.
Jillian and I will be hanging out at home for the next few days so she can get nebs and rest. She has a follow up with one of the pediatricians on Friday afternoon.  

I would like to do a shout out to the amazing people at the walk in at the Lake Geneva Aurora Clinic. I have had a lot of issues in the other departments of that clinic however the walk-in is great. The walk-in in Kenosha will not touch Jillian because of the tube. Many tubie parents struggle to find care for their tubie other then at a Children's hospital, even if it is for something that has nothing to do with her  tube. Thank you for the awesome care we got yesterday and to be willing to see my tubie. It means a lot to this mom!

In jumper reading a book

Birth to 3

Today we did the paperwork for qualification for birth to 3 and her IFSP meeting. Jillian currently qualifies for services because of atypical development because of the feeding tube.
When I first met with her service coordinator Jillian was not sitting, rolling, or making many sounds. Since our first meeting 2 weeks ago she has mastered sitting and is making more sounds. She has worked really hard in the past few weeks, and so have we. With all of her gains in skills she is not all that behind her peers and has made amazing growth quickly!
Jillian did a great job of showing off her skills today. She hung out on her belly, sat up, and even made a few new sounds! I am so proud of her. 
We decided that since she is so young, can only take 15ml of water or milk, is starting to make some sounds, and is having the tube moved and that will hopefully clear up her ears, that we will start with speech seeing her once a month. They are going to see her for the first time at the start of next month (after her surgery) and they are looking at meeting at daycare since that is where she spends a lot of time during the school year.
We talk about some different strategies to help Jillian's development and most of them we are already doing at home. That is one of the advantages of having the same degree as a person who would be a service coordinator. At the same point it is a little strange to be having someone provide services for Jillian that I am qualified to do. But I think part of the reason we are not having them meet with Jillian more is because I am trained in early childhood development and I just do some of the things with her without realizing it.
Tonight she is sleepy. She is a supper happy girl for someone who got up at 7 and has only napped for around an hour total
today and that was in 3 separate naps!
She made a mess out of her bottle tonight but she drank it. She is now trying to fall asleep on my chest but keeps throwing herself in reflux pains. I can hear the sounds of her tummy and gulping. She has to work a lot harder when she is sleepy to keep food in. It is kind of a viscous circle because eating wears her out but then she cant sleep because it hurts. Oh the conundrums of Jillian!

Been at this a few days now

For the two week trail I am trying to keep really good notes to be able to bring to the doctor with us. Here are the scans of the sheets up to today. You can click on the sheets to make them larger. The way the form I am using looks has changed a little since I have found different things that needed to be add/changed while using it.

For today she drank 7ml of the water. She also has been coughing every time she wakes up. I am not sure if she is choking on something when she is waking up or what is going on. Sometimes she coughs while she is sleeping too.
There is no way I could write down each time I hear her reflux but I am writing down the big ones. 
For this trail she has been her happy normal self most of the time but she tends to be upset after she eats and is more irritable. Brent and I both feel that she is more fussy and acts like she is in more pain right now then she has for over a month. We have had more times of random screaming then we were having.

She had her 6 month Dr. visit today with her ped. She gained 2oz since Friday which is great for the diet she is on. The dr said she is looking good and that her ears look good. She put in the birth to 3 referral that Children's wanted.  I'm not sure if she will qualify but we will see.
I told her dr about the trail GI is doing and how it is going. She asked if I had called GI about how it is. I told her no because they wanted to give it 2 weeks.  She expressed that she thought life would be easier if they placed Jillian's tube into her tummy because she is going to start pulling at it more as she gets older. Please pray that GI holds this same opinion and that if it is God's will that she will be able to have the surgery sooner rather then later.
She also got one shot today. We space her shots out because if she does more then one at a time she seams to get sick 10to 11 days later. I know, weird delayed reaction but this is Jillian. The nurse gave her the shot and she did not make a sound. She was playing with her passy and could have cared less that a needle went into her leg. The nurse was impressed :)
Last night before her bath she sat up unassisted for about 30sec. She would not do it for the doctor today but she is working hard at sitting up. She wants to know whats going on. Last week the three of us went to the mall after her dr appointment and for the first time we put her in the stroller without the carseat. She thought it was great to look at everyone!
She is in LOVE with her feet right now. She loves to hold onto them, however she is not a huge fan of them touching the floor while she is laying or for them to be in water. She works really hard sometimes to keep her feet from touching things. Sometimes she does some really funny sensory things...
She also is in love with her bear blanket. My mom and I got it for her a few weeks ago and she likes to just hold it. It is a mix of some of her favorite textures and she will keep it by her for hours. It is also a lot more manageable to carry around then the blankets she was trying to carry around.
On another possessive note, her new backpack said it shipped. Now is the waiting for it to arrive. I am so excited to try it. I got home yesterday to the UPS truck pulling out of our driveway. I got all excited just to find out it was a tech manual...

Some other ramblings about our life:

• My van is having an issue starting right now. If I try to put the key in and start it right away it just sputters and will not start. If I put the key in, turn it to the second key position, leave it there for several minutes and then try to start it will turn over after a few sputters. Any ideas are welcome.
• This weekend is a boys weekend at our house. Dan is moving in soon and we are getting things ready. The bathroom on the level of the house he will be moving into has some issues. When we bought the house it was not winterized properly so some pipes had problems when we turned the water on. That bathroom had the most problems and we have not dealt with the issues yet because we have just pretended like we only have one bathroom even though we have 3 but 2 do not work. Dan's  dad, Brent, Dan, and my dad are going to work on the bathroom this weekend. 
• My borther-in law was supper sweet this weekend and came out and mowed our huge lawn!

No catchy title here

Yesterday we went to see Jillian's GI at Childrens. There was some good in the appointment and some frustration.

Good:

• Jillian is up to 17lb. That is a normal weight for a baby her age which moves her out of the category of currently failing to thrive. To achieve this weight we cut out all mouth feedings for nutrition and had her on a "catch up" calorie diet to help her gain weight quickly. The diet worked!
• Jillian is going to be evaluated by Birth to 3 to see if she qualifies for any services. They are thinking she will qualify for speech under eating because her sucking is less coordinated then it was and water comes running back out of her mouth.  I am not sure if she is far enough behind right now to qualify but we will see.
• Jillian no longer needs to be on a catch up diet and is moving to a maintenance diet.  We will see her weight gain slow dramatically but it will go to what is typical for a child her age. She is moving from 27cal breast milk to 24cal milk which means she gets less formula. Hopefully with less formula she poops better. She will also be off of the pump from 4pm to 10pm. 
• They increased Jillian's laxative so she hopefully does not have to push so hard to poop. I just need to have the mail order pharmacy fax them for the scrip (hopefully that goes smoothly) 
• We are moving her pump rate up slowly for the next few days from 40 to 46.
• We see her GI doctor again in 2 weeks

Frustration

• We are trying milk again by mouth. I know to most people that would sound like a good thing however I am not convinced that it is. At 7pm each night she will get a bottle with up to an ounce of fortified breast milk. This concerns me for multiple reasons:

• She has been choking on her saliva from teething the past few days and that is no where near an ounce at a time.
• She has not been taking the water great so I'm not sure how she will do drinking that much.
• This brings back all of the night fears of choking, and not to sound totally selfish but I just started to be able to sleep without as much fear. 
• I feel that we are taking steps backwards right now in the bottle aspect. I know that introducing bottle right now feels like going backwards is strange but I'm not sure that we are at that point yet  to be introducing milk
• I fear for her choking on milk and it goes into her lungs, that is one of the reasons we pulled her off milk in the first place. 

• All tests have been postponed until after this trial! I get the logic of the trail, to keep going back to the most "natural" thing, but what is the most "natural" is not what is best for Jillian...
• If we do tests they are talking about doing them next at tube change in July. We would just be switching out NJ tubes at that point and not putting in a GJ. By the time be would get test results back and if we decided to go with a surgery that would probably put us at the start of the school year, which is not the ideal time for a teacher. I was hoping to move this all along faster this summer while I am working half days. I know it is not on my timing. I feel like I am being beaten over the head with that lesson right now. 
• After Jillian's appointment in two weeks her GI dr. goes on vacation for a while. I know it is something everyone needs, it is typically when  one of her doctors is away that Jillian ends up with a problem.  
• We are pretty sure this "trial" is going to fail. The nutritionist hinted that she thought it might too. So we are delaying that inevitable, and the inevitable is what I think is going to be best. 

Today:

• It is almost 11am. Jillian has taken about 9ml of water. She was offered around 13ml. 
• She started refluxing almost immediately after. 
• She has chocked twice
• We are running her pump at 42ml/hr
•  She is trying her first milk bottle since mid April around 7pm tonight

Prayer Requests

• That if the trail is going to fail it fails quickly. I don't want a slow two weeks of hard. I will call the doctor if this is not working and the choking is too much. Already with 9ml of water she is showing what it does to her body and the pain it causes. By not doing feedings in the mouth she is not in pain. This is why I see the tube as an amazing blessing. 
• That we can get tests scheduled quicker then mid July.
• That I keep my eyes pointed on HIM and remember that it is not all about my timing.
• For listening ears from the doctors and for me to articulate Jillian's needs efficiently.(I am struggling a little because I feel like maybe I did not speak up enough yesterday about this plan)
• That if she is going to continue to use the tube for a while that we are able to switch to a GJ sooner rather then later. 

Blessing:
Last night we had the chance to go out to dinner with a group of people that are some of the main pillars of our support team. They are over at our house frequently and lift us up in so many ways. We could never express to them how grateful we are to have them in our lives but it was nice to get to spend a little time with them and try. We went to Bucca di Beppo's in Milwaukee for dinner and then went to Kopp's for ice cream. It was a fun night and Jillian joined along for the ride. The only time she was really fussy was when they started singing their birthday song that the restaurant to another table. The look on Jillian's face was priceless because she had no idea what was going on and it scared her. I love that we have a little girl that is able to join with us wherever!

Waiting with daddy for the doctor

Some people look at me crazy when I say I am so grateful for the tube and all it has done.  Others look at it as a hindrance. I look at it as the solution God has given us right now for Jillian's eating struggles. I see it as an answer to prayer and I am grateful for it. Yes it can be stressful at times, but the blessings are grater.

Run, Run, Run!

Friday:
It was our 4 year wedding anniversary! It is one of those things that feels like yesterday but forever ago. Brent took the day off of work to get the house ready for the party. He kept Jillian home with him and they spent the day running errands and cleaning. During the day Brent's grandparents came over to spend time with Jillian and help out at the house. After I got done with work my parents and Dan come over. Dan spent the night.

Saturday:
Brent woke me up with waffles! Yummy! Jillian decided to sleep in til 8am!!! She peed through her overnight diaper she slept so long :) We started cleaning up around the house and Brent and Dan started outside. In early afternoon Brendon, my parents and brother came over to work on the house. We ordered pizza for dinner and mom and I ran into Lake Geneva to pick it up and go to walmart. After dinner Brent's dad brought out things for the party. The boys had a bonfire and mom and I worked on putting away Jillian's laundry.
Jillian's allergies are really bothering her. In just running to walmart her eyes puffed up again. Poop baby. She has a cough, runny nose, and still has a little goo in her eyes.
In the morning she had a blow out diaper. One of those to her hair poops! 

Sunday:
Up and at it early! I went to put the news on while Jillian was sitting in her Super Seat. There were racing cars on instead of news so I started flipping channels and came across Curious George. Jillian about jumped out of her seat when she looked at the monkey. I figured I would let her watch it for a little while. We don't normally let Jillian watch TV but this was just too cute! As we were about to leave Jillian pooped again. I took all of her clothes off before I laid her down to avoid the poop leaking out when I laid her down. Thankfully this worked and I did not have to find new clothes.
We headed off to church and Jillian loved watching grandpa play guitar. After church Brent went with Jillian back to the house and my mom and I ran to the store to pick up some last minute things for the party. We got back the house and Brent's parent's, grandparents, brother and Dan were at the house getting things ready. My dad and brother joined us shortly after they got done at church.
The party started at 3 and people started arriving just before 3. Around 4pm it started to rain and most people moved into the house. This worked perfectly because around this time Brent came to get me. We had a problem... each time someone flushed the toilet, poop water flowed into the backyard! I was so grateful for the rain at that point because it got people out of the yard. The party went on like nothing was happening other then a little rain. We did not want to spoil the fun for everyone.
During the party my mom hung out with Jillian. I am not a fan of the game pass the baby. It is too easy for the tube to come undone and leak everywhere. Also, she is already fighting an ear infection, and allergies and the last thing she needs is to pick something else up.

Working to get anything in the line

When we were cleaning up from the party Brent went to give her meds in her tube. He started with a water flash like normal but he could not get the water to go in at all. He would push down on the syringe and water would fly out everywhere. I came over and gave it a try. We tried different syringes, temperatures of water, and all the other tips we have gotten from GI and nothing was working. I called Dan's mom to see if she had any ideas and she said we needed to get her seen. I called the hospital and they paged the GI fellow on call. They called me back and said we would need to come it to try to get it unclogged and if that did not work we would need to stay the night and wait for morning to get it changed out. We started packing our things for the hospital stay and to stay at my parents until we could use the bathrooms at our house again. The packing was more like throwing but my mom helped us get things together and we got out the door kid of quickly. We left the hospital with people still in our house and instructions with Dan of what needed to be done before he locked up.
When we got in the car my mom called my Aunt Sandi and told her we needed prayers that they would be able to unclog the tube. Part way to the hospital my gas light came on so we stopped in East Troy for gas. I told Brent to try it one more time and he pushed a little and it started to go. We were able to flush 10ml into the tube! Whatever had been clogging the tube was gone! Since we no longer needed to go to the hospital and we could not go home we headed to my parents. My dad, brother and Dan met us there and we all hung out for a little bit before going to bed.

Monday:

Helping make pancakes

We woke up and my dad was going to make us pancakes however he did not have enough eggs, flour or milk to do make them so my mom and I ran to walmart. We picked up the food and some bottles that have the same nipple shape as the passy she loves to see if she would drink those better. We came back and dad made us all pancakes. After breakfast we ran to Ann Taylor quick since they were having a big sale and I am working on building up a new wardrobe since my clothes are too big. I got into a size 4 pair of pants!!! We also hit Carters since they had up to 70% off! Jillian got a few new things in bigger sizes :)
We ran to Target to pick some times up quick. Mom and I were checking out the clearance and came across the base for Jillian's car seat on clearance. Someone had returned it from an online order and it was over 50% off. We had been looking for a base for Brent's car for a while but no one was selling them or they where really expensive. I was so excited!!!

The roommates! Dan is moving back in

We decided we would do dinner together as a family since my brother is leaving for New Hampshire for the Summer on Thursday and we are not all going to be together between now and then. My brother mean a lot to me. We have not really been the fighting siblings and have gotten along so well. He is an amazing brother. When our heat went out in January Seth came over and helped me with Jillian and dealing with repair guys. He is very protective of his big sister and niece and would do anything for us. We almost lost him this year. He got very sick in November and almost died. The doctors told us that if he had not gotten to a hospital when he did he would probably not be with us. We call him and Jillian our little miracles.
At night Brent was holding her and she pooped. He changed her quick and put her in pajamas. He picked her back up and they were playing again and she pooped a second large poop. Hopefully she is starting to get some out! We all thought it was funny though! We tried Jillian's new bottles. She still only took 1/2 of the water :( We will keep trying

Tuesday:
Brent, dad and  mom had to be at work. Jillian and I slept in a little. I gave her a water bottle with one of her new bottles and with a little coxing and work she took it all!
I called the pharmacy because her laxative is suppose to be a 30 day supply but I picked it up on the 13th and it ran out this morning. With the amount of measuring we do I knew we did not mess up that much. I called and they said that even-though the bottle said quantity of 30 2.5ml doses there was only 12.5 days worth in the bottle because they only put 12.5 days worth in the bottle. This is a problem on multiple levels. First, I now have to pay again to have it filled for the rest of the month. Second, my insurance only pays for 3 fills of the same prescription a year at a store. The rest we have to do mail order. This now counts as one of my fills and we dont see GI until the 7th to get a prescription to mail in that will still take a week or so to get filled after I mail it! GRRR!
I also called med supply. On the 1st of the month we got 30 bags for her pump. This is a 31 day month and the 1st of June falls on Saturday so I need more bags this week. I called and the lady asked why I would need more bags now since I ordered at the 1st of the month last time. I explained the math and she said I can only have 35 bags in 1 month and I can not order another months worth of bags until the next month. She said she could ship me the 5 bags left that
I am able to have this month and then next week I had to get a delivery of the 30 bags for next month! GRRR

When I left the room she was on her belly

This morning the guy came out to pump out our septic to see if it was just full. He pumped it out and said that the septic system had a problem and we would need to call someone else to fix it. We are now waiting for them to come out and hoping it is not a big costly problem.
This morning Jillian spent some time with her uncle Seth. He had to leave and said goodbye to her and she started uncontrollably screaming. She is going to miss him a lot!

Well, I'll keep you updated on the backyard poop situation, and the Jillian poop situation... and those silly bags!