Rough Day...

Today has been a rough day for Regan.  Her G tube is bothering her. Feeds are difficult, she is cranky and wants me to hold her all the time. She has been running a low grade temp for two days now and her G tube sight looks bad and is tender to the touch. 

This is so frustrating. To watch her uncomfortable and in pain. Her coloring has been pretty good lately, with rosy cheeks. But just yesterday her coloring started to change, and she's pretty pale again. I am hoping its nothing and she just has a little bug on top of her g tube infection, but I am worried about her.

And tomorrow morning she sees GI and I have no idea what to expect. So I am nervous. Please continue to keep my princess in your thoughts and prayers. I will post an update when I know anything more! 

Thank you for your support!

<3 Reagan and Family <3

Maybe she's cranky cause I gave her a comb over today! Haha silly momma!

The perfect blog post

I realized I have been avoiding making a new blog post because I want it to be the the perfect blog post. And that's probably never gonna happen. So I just need to start writing and let it go where it goes.

Our life in this house can be really crazy. We have some pretty amazing moments in this house, like drumming, singing, dancing, playing hide and seek, snuggling as a family, letting each other know how much we love and care for each other. 

And we also have some scary moments. And those scary moments seem to last days sometimes when they are happening. And sometimes you can't get the them out of your head, that moment, that unbelievably terrifying moment, well it can replay in your head over and over and over again. It's hard. I try to play it off most days, I do. All of this- her care, her expenses, the  daily preparations that go into her care, the phone calls to/from her 10 specialists (plus her peditrician), the information to be retained about her care and diagnoses, the constant thoughts and worries- it can be a lot. And we (and I include ALL of you; our family and friends) handle it the best we can. I say we, because what happens in our house effects all of you too. From phone calls from my husband and I crying, and needing to "talk", or needing a ride to an appointment, or you having to taking care of Addison while Reagan is in the hospital, or sending your prayers and love to my little family and "our little fighter". 

Whatever it is you have done, you have become part of our family, and you live in our house with us. So it's time for me to start sharing a little bit more about Reagan's daily life with all of you. Its so you know and you understand that if I don't always answer my phone, emails, texts, Facebook messages- that I heard you, we heard you- we thank you- and you are always in our thoughts and prayers too. We love you and thank you for EVERYTHING, BIG and small.

So family to family I wanna share with you how I worry about Reagan 24/7. Sometimes I may seem like I am somewhere else, It may seem like I am on another planet, it's probably cause I am. There is no doubt I am thinking of what appointment or testing is coming up, the preparations for the rest of the day and the days to come, the symptoms she is experiencing, the doctors I need to call, and let's not for get about the awful task of being patient while waiting for test results come in! My mind is clouded at times. I feel overwhelmed. My husband feels overwhelmed. Addison worries about her little sister. Our extened family worries too. It's hard. But together, all of us, we stick together we pull thru.

Some of the things I am anxious about is some of her up coming testing and new specialist appointments. And here is why...

She saw genetics recently. Her geneticist says she has seen a million babies like Reagan before. And she is confident that her genetic testing is going to come up with positive results. She suspects connective tissues disease. She said it doesn't fit all her diagnoses but most, she said she could have two genetic syndromes, and we won't know til the testing comes back. And hopefully it will let us know what the long term is going to loom like for her, what her care will consist of. 

She also wanted Reagan to see an ophthalmologist because her peditrician said it kinda looks like she has a "lazy eye", and apparently with some types of connective tissues disease you can have eye problems. Then she was concerned with the fact that Reagan has had so many upper respiratory infections since birth and is now on her 3rd g tube infection! She she decided that she should go see an allergist/ immunologist. She also ran some lab work to check her immune levels and they were pretty low. Her geneticist is aware of those results and is deferring her to the allergist/ immunologist for further work up. The abdominal ultrasound her geneticist ordered was normal, which is awesome news! Her geneticist said that we are gonna get a lot of normal results back, but we are also gonna get some abnormal results.

It just makes me nervous, we have been looking for answers for 7 1/2 months, I NEED to know what causing all her issues, but I am terrified of what is gong to show up. We are expecting a call from her next week to discuss some results. 

I mentioned before that she is on her 3rd G tube infection and she is now on her 11th day of antibiotics out of 21 days. She has to be on it until she can see her GI doctor on 10/30. Needless to say it gives her bad stomach aches, and since starting it she has lost 2 oz. I feel so bad for her. But she is so tough, she sticks it out and kicks butt. I am so proud of her.

So those are the big things in addition to the little things that I am always worrying about. Now you know. So I am gonna wrap this up. It's not a perfect blog post. But I was able to communicate to all of you reading this. So thank you! Thanks for reading, thanks for caring, thanks for your patients! As always, I will post when I can. And hopefully next time I don't wait 2 months! :-) 

Love,

Reagan's Mom and family!

Infected with tears...both good and bad!

So Reagan was discharged on last Friday 8/9. While she was in the hospital she had some questionable discharge coming from her G tube. She was also having a lot of pain and tenderness whenever I touch it to put the extension on or cleaned it.

By Friday night she had bloody greenish yellowish puss oozing out of the site. On Saturday the visiting Nurse came for a visit and was concerned by the look of it. So we took her to the pediatrician on Saturday, lucky for us her PCP was on call that weekend and was able to see her in the office.

She was concerned that she could have an abscess. Her first thought was to send her back down to children's. And the she felt bad even having to suggest it. I asked if we had any other options, so we came up with the following plan after talking to the surgeon- they cultured the ooze coming out of the site. Started her in antibiotics and sent her home. She had a follow up in Boston with the GI nurse to check the site on Tuesday 8/13. 

In the mean time I brought Reagan back home. She was vomiting 1-2 times a day and spitting up. She was screaming and crying at times for long spans of time, she just wasn't herself.

Tuesday came and Anthony and I brought her down for her appointment. The nurse asked what antibiotics she was on and I told her. The nurse didn't think that it looked right so she asked one of the doctors to come look at it too. And the doctor agreed it didn't look good. So they increased the dose of antibiotics.

We got home that evening and within 30 minutes we got a phone call from her Peditircians office saying that the final G Tube cultures came back and the bacteria is resistant to the antibiotic she was on. Grrrrr! We were so frustrated, this poor baby can not catch a break.

So on Wednesday morning her visiting nurse had come in the morning and took her temp and weighed her, and she still had a fever and had lost 4 oz since Saturday. I called down to GI to make sure she was being put on the right antibiotics. They waited all afternoon for the culture report to show up and when it finally did they opted to put her on a different antibiotic.

I was given clear instructions that if at any point her condition worsened then I was to bring her down to the ER. I was also told that after 24hours of her being On the antibiotics and she still has any of the same issues: fever, vomiting, feed intolerance, pain etc.. Then she would need to come down to be seen.

Wednesday evening she had her first dose of the new antibiotic, and there was no noticeable change. 

Thursday morning the same thing no change and she still had a low grade temp. She was due at 3pm for her next dose of antibiotics. 

In the meantime I called down to GI because she still wasn't tolerating her feeds and I kept having to stop her feeds because she was refluxing. Most babies have reflux and its not an issues, but she is at a high risk for aspirating her reflux because of her laryngeal cleft, Laryngomalacia, and trachomalacia. By the time I got a call back from GI her G tube looked a bit better, but it still had some nasty drainage coming from it. Her temp was at 100.2 which is still a low grade fever. 

The nurse I talked to said that she had strict instructions from the doctor that if she wasn't better then Reagan needed to come back down....

This might sound a little selfish on my part, but it has been torment to watch her go through all that she has been through and I wasn't sure I could handle it anymore. It's easy to be strong for your kids day in and day out. But there are times and certain things that you just can't handle. And the thought of having her put back in the hospital and separating our family once again was just devastating. I wanted to avoid it at all costs.

I had multiple conversations with the GI nurse on Thursday. One of the last conversations was that she thought that Reagan should go to the children's hospital ER. I made one final plea and said "she has only had two doses of antibiotics, can we give her her next dose and see how she does with it, and if she still has a fever then I will bring her in?" 

Call it denial or fear of what was happening, I don't know. All I know is I knew deep down inside that she needed to come down here. I was just tired of all the ups and downs. She already had 8 hospitalizations in her short life, I didn't want it to happen again.

So the GI nurse said she would talk to the Dr, and see what she thinks, but her gut was telling her that Reagan needed to be seen. She said she would call me back.

In the meantime Anthony and I packed bags for Reagan and Addison, and took Addison to my parents house while waiting for the call. We were there about 20 minutes before my phone rang and I knew it was them.

And the verdict was in, the doctor said that she MUST come in. We were sad, but knew and understood it was in her best interest.

Waiting to see the doctor!

Within 15 minutes of being in the ER we knew she was being admitted. Her temp had spiked to 101.8. They decided that the needed to give her IV antibiotics to get ahead of the infection before it spread to her blood. They started her on one type of antibiotic before realizing it wasn't quit doing the trick. They finally received the culture report from her Peditircians office this morning and realized that the bacteria that was causing her cellulitis was resistant to all but one antibiotic, that they try not to give to little ones cause of the side effects. So she got one dose of IV antibiotics. And they sent her home to recover at home! So for 7 days she will be on Antibiotics at  HOME! And hopefully it will fix everything.

As far as her vomiting is concerned the doctors said its probably caused by the infection, a side effect of the antibiotic, and possibly the position of the G tube.

So the priority is to clear the infection from her body. Once that happens we will be able to figure out how to get her to tolerate her feeds. In the meantime she is on a very slow rate.

So the good news is... WE ARE AT HOME!!!  She is resting and fighting off this nasty infection! She was happy when I told her we were going home even thigh she still feels a little crappy.

I will post updates as much as possible, things can get pretty crazy in this house as I am sure you can't tell. Things change real fast.

I also wanted to add how greatful we are to EVERYONE for all your love and support and generosity. It brings tears to my eyes to think that there are so many people out there that care about Reagan and our family. You have no idea what it means to me and my family. It certainly take a little stress away. So THANK YOU, THANK YOU, THANK YOU! I will never be able to stop thanking people for all they have done. So let me add one more...THANK YOU!

Love, Reagan and family!

Feeding tolerance/ HAPPY FRIDAY!

Reagan was brought in because she wasn't tolerating her tube feeds and was vomiting. 

I am happy to report that the little princess is doing much better and is tolerating her feeds.

The doctors think a couple of things happened that made her stop tolerating her feeds. First thing they think happened is that she still had anesthesia in her system, they said sometimes it takes certain kids a little longer to get it all out of their systems. It can make them sleepy and slow down their digestive tracts, hence the vomiting. They also think that she got a little hospital bug from being in the hospital so much. She had a low grade fever, she was pretty sleepy/lethargic, and she was super cranky.

When she was first was readmitted they couldn't let her feed through the G tube, they had concerns that the tube had been dislodged and that could have caused her intolerance. So for 48 hours she received IV fluids until the surgeons figured out if it was safe for her to feed through her tube.

What they did find is that the ballon at the bottom of the G tube had a little too much water in it and could have been adding some extra pressure on the contents of her stomach. So they removed the excess water and started her feeds slowly again.

They first started her on pedilyte on a slow continuous rate, then advanced her to half pedilyte and half formula at a higher rate. They then allowed her to go to full strength formula and slowly started the transition over to her bolus feeds.

She has been tolerating her feeds well and she gets to go HOME today! Happy Friday! Lets just stay home this time! 

Thanks again everyone for your love and support..We appreciate it!

Love, Reagan and Family

Déjà Vu!

Wait didn't we just leave this place? Yes that's right, you guessed it, Reagan is BACK in the hospital. She wasn't tolerating her feeds, was vomiting, and irritable . And her GI doctor decided she needed to go back to Children's ER and from there she was readmitted. 

This destroyed our spirit last night as a family. It's been difficult.

They are checking to make sure that the G tube is functioning. 

And now she is running a low fever, which they are watching to see if it spikes, before they give her meds. So I have a cranky baby on my hands that hasn't eaten since 1pm yesterday!

Will post an update later...

Home sweet home!

We had a wonderful afternoon and night back at home! It feels so good to have the whole family together again!

Everyone was so relaxed and happy to be home!

Home home home!

This little nugget gets to go home today! Yay!!!!! We are thrilled! She is tolerating her feeds well! So very happy!

We can't wait to go home and spend time together as a family!

Thanks for all the love, well wishes, and support!

Love, Reagan and Family

Homesick..

Both Reagan and I are home sick. We miss the rest of our family so much. The Doctors said that she should be able to go home today, but they changed their minds. They want to make sure she is able to tolerate all her feeds before they send her home.

We are hoping she goes home tomorrow. If not she should go home Monday for sure. 

We shall see. In the mean time I am very home sick and can't wait to be home for good!

Reagans' extra belly button!

Here are some pictures of her G Tube.

On the mend..

Her surgery went well. She was pretty content when she first got back to her room, until she laid eyes on me. Then she started to cry. Her voice is really hoarse from when they put the breathing tube in during surgery. So I feel so bad for her. 

She started to have some pain and they gave her Tylenol. It don't do much for her. So they gave her narcotics. She is sleeping peacefully now.

She should be able to go home tomorrow evening, as long as she doesn't develop an infection and she tolerates her feeds through the tube.

We will start feeding her through the tube  at 7pm. And start with pedilyte. As long as she tolerates that she will be able to try formula.

Here are some pics of the princess when she got back to her room....

She refused to let go off thumb for the first 45 minutes, she would take a peak at me very few minutes to make sure I was still there. 

First smile and she gave it to her Mimi!

Just like her mommy loves when Dada rubs her head!

Waking up before the pain started to kick in!

Only wanted to be held by momma! I love this little girl! She is such a tough kid!

Just went in for surgery!

Reagan was in good spirits this morning before surgery as long as mommy and daddy were holding her. I even got her to laugh a couple of times! 

Here are pics of her in OR holding room waiting to go in. She wasn't too happy at first. But she cheered right up as soon as I  started acting silly!

Surgery..

Reagan is 5 months old and will have her 3rd surgery in the morning. Her first surgery was a Supraglottoplasty on May 4th (10 weeks old), she had a second Supraglottoplasty on June 6th (15 weeks old). And tomorrow they will put a G tube in (23 weeks old). 

At first I was fine with the decision, but as her surgery approaches I am getting very nervous. About the surgery and care at home. It saddens me at times that this is what her life has come to, hospital stays and surgeries. And I know that it could be worse. But it still hurts to watch her go through all this. No one wants to watch their child fall and get a boo boo, let alone have to have had three surgeries in their first 5 months of life.

I am very overwhelmed right now and will make a post after her surgery to update everyone.  Her surgery is at 10:30am. All I ask is that you send healing energy, positive thoughts, lots of prayers, and lots of loving thoughts her way tomorrow.

Thank you..

 Love Reagan and Family

The Mayor of the 11th floor..

I know I was gonna post an update the other night about little Miss Reagan, but I've had a hard time explaining what's going on to family members let alone trying blog about it. So I am gonna make an attempt.

When her GI doctor came to see her, Anthony and I explained how she has been since she was discharged. She wasn't tolerating her feeds well, she was still refluxing and had two clear aspiration events. 

In talking with them they decided that its important for us to protect her lungs and improve her daily living. They had warned us in her last admission that down the road she could potentially get a more permanent feeding tube called a G tube. The Ng tube that goes in her nose and down her esophagus into her stomach is usually only meant to be a temporary measure. They are a culprit for infection and can cause irritation and inflammation in the nose going down to the stomach.

The decision was made that she would be getting a more permanent feeding tube. The only question was what kind would she be getting. There are a few different kinds, and in her case she has three options which I will get to in a minute. One of the things they decided to try was a drug for GI motility. 

"Gastrointestinal (GI) motility refers to the movement of food from the mouth through the pharynx (throat), esophagus, stomach, small and large intestines and out of the body. The GI system is responsible for digestion." -UC San Diego Health System GI motility specialists. 

Because she vomited 1.5 hours after a feed the other day, they suspect that things aren't moving through her digestive tract like they should be. The drug they put her on to help her motility is erithryomycin, which is actually an antibiotic. It is used to help move things through her digestive tract, apparently it stimulates the gut. They give it in very small doses so it is very very unlikely that she would ever build up an antibiotic resistance. This drug is apparently much safer than some of the older motility drugs they have, which can cause neurological side effects.

This drug is a trial for her to see if it improves her symptoms. Depending on how she does with her feeds while on this drug will determine what kind of feeding tube they decide to do. If the drug works for her she will get a G tube. If its not working she will get a G-J tube. And her third option is to get a G tube with a Nissen Fundoplication.

A G tube or gastrostomy tube is:

"A gastrostomy feeding tube insertion is the placement of a feeding tube through the skin and the stomach wall, directly into the stomach." -Neil K. Kaneshiro, MD

A G-J tube is:

"A G-J tube is a single tube that passes through the abdominal surface, into the stomach and down into the second part of the small intestine (the jejunum)." -Boston Children's Hospital/ Harvard Medical School

A Nissen Fundoplication is:

"During fundoplication surgery, the upper curve of the stomach (the fundus) is wrapped around the esophagus and sewn into place so that the lower portion of the esophagus passes through a small tunnel of stomach muscle. This surgery strengthens the valve between the esophagus and stomach (lower esophageal sphincter), which stops acid from backing up into the esophagus as easily." -WebMD

There are obviously risks and benefits to each. Including some being major lifestyle changes for us. I mean tube feedings in general are a huge lifestyle change especially when you are looking at them more as a longer term thing than just a few weeks. Right now she gets what's called a bolus feed which is run over a short period of time in intervals. So for Reagan she gets 4oz of hypoallergenic formula slowly over the course of an hour. Her feeds are every 3 hours starting at 6am and ending at 12am.

She can also have continuous feeds, which are given very slowly and continuously over the course of a 12 hour period, or 24 hour period. So if she has continuous feeds she will be connected to the feeding pump for 12 or 24 hours. If she still doesn't tolerate her bolus tube feedings she could be switched to continuous feeds.

If she gets the G tube she will most likely get bolus feeds. If the bolus doesn't work she will be switched to continuous feeds. If she gets the G-J tube her only option is continuous feeds.

If she gets the Nissen Fundoplication with her G tube (which I am not I am not fond of) there are some yucky side effects. If she ever gets a stomach bug and has to throw up she could have difficulties and will retch. In my research I found out that the surgery is never undone, it is permanent, so any side effects she has from it will be life long. Another side effect is it can loosen and she would need to have another surgery to repair it. It also isn't always effective to stop reflux from coming back up.

As you can see we have a few options and it's a bit overwhelming.

We were hoping she would have her surgery today to place the tube, but as the nurse said "GI needs to get their shit together and come up with a plan". There is a chance that could get together and she could have surgery today at the end of the day. But it will most likely happen tomorrow or Wednesday. There is a chance that if they are too busy to do the surgery she will have to go home and come back when they can schedule it. But it is most likely gonna happen over the next couple of days.

She is having the tube placed for many reasons. Mostly because she refluxes up and aspirates on it. But she also has Anatomy abnormalities of her throat and airway that  prevent her from feeding by mouth and aren't going to resolve any time soon. Placing a more permanent feeding tube is her best option. It also can be removed very easily at anytime her team of doctors decides is best for her.

So right now we are waiting for GI and the surgeons to come up with her schedule. I hope this explains it all well. It can be very confusing. I will update when I know anything. 

In the mean time here is a pic of the Mayor of the 11th floor from this morning...

She was referred to as the Mayor of this floor this morning by one of the nurses  because all the nurses and doctors know her and come to visit her and play with her cause she is so darn cute. Also whenever we go for a walk we literally have to stop ever few feet cause someone wants to say hi to her and talk to her from staff members at the hospital to other kids and parents! She is very popular her. Mayor Reagan Jean!! Haha

A mini adventure!

So I started this whole post updating on what the doctors talked about during rounds this morning, and my phone died in the middle of it! Instead of typing it all up right this second I will save my update til tonight in case there is more information to add.

For now Reagan is doing well. She is not quite her old self yet, but she is better today than yesterday!

They allowed us to go for a walk in the beautiful garden called the Prouty Garden, which is on the grounds of the hospital. So I wanna share pictures with everyone of our mini adventure!

Here we go...

 Reagan in her car seat waiting patiently for us to leave.

First BIG smile of the day while waiting for the elevator! So happy to be out and about!

Relaxing in the shade breathing in the fresh air!

People watching with Momma one of our favorite activities! Haha

Dozing off!

Her and I wanted to go for a swim in the fountain, for some reason I don't think that would be acceptable..

Flowers are EVERYWHERE!

Coolest looking tree!

Oh and as we were sitting in the garden a helicopter took off from the helipad! Of course I took pictures of it, it was so cool!

Helipad on top of the building!

You can see the blades going.

And the take off...

It backed up from the helipad, then switched directions really quick.

When it turned around we got a HUGE gust of wind from its blades, it felt like a strong breeze. We both loved it!

And now we are back in her room. Which she started to cry when we entered. I think she thought we were going home, poor baby! I felt bad.

Update on her treatment plan to come later. For now we are both gonna get a nap in!

Just published this post from Reagan's room and I was looking out the window when the helicopter returned! Had to post the pic. It is massive flying by her window compared to the picture.

8 days of freedom then Pneumonia happened...

So I've been sitting here trying to figure out how I want to go about this post. For the last 8 days I haven't had the time or energy to post an update. Our daily schedule can be a bit hectic. When Reagan was discharged we were THRILLED. Our family felt whole again. We celebrated Addison's 2nd Birthday, and had a blast. It felt good to share a positive day with our family after all that has happened. As some of you probably have figured out already that Reagan's life things can change very very fast from good to bad, and bad to better, and better to horrible. 

Her daily routine looks like the folowing:

6am-7am  FEED through Ng tube

8am Meds

9am-10am FEED through Ng tube

12pm-1pm FEED through Ng tube

3pm-2pm  FEED through Ng tube

6pm-7pm  FEED through Ng tube

8pm  Meds

9pm-10pm FEED through Ng tube

12am-1am FEED through Ng tube

*Reagan can't go on her CPAP machine for 30min after the end of her feed, so my night ends at 130 am at the earliest. Sometimes she doesn't tolerate her CPAP machine well and I give up trying at around 3am cause I am so deliriously tired.

In addition to her feeding schedule she also has lots of visitors who assist in her care. She has a Visiting nurse come 1-2 times a week. She has Early Intervention following her and a nurse comes out once a week, and her physical therapist comes out once a week. She also has a respiratory therapist come to check in on her CPAP machine and other equipment. She has appointments with her primary care doctor, GI doctor, nutritionist, ENT doctors, and neurologist.

When Reagan came home last week she came home with a lot of equipment, so I quickly set out to reorganize my house and make it feel more like a home instead of a hospital. Reagan has oxygen, a CPAP machine, oxygen monitor, and iv pole with a tube feeding pump on it. The set up looked daunting to an adult let alone Addison and any other children that stepped into our house. It took a few days but I came up with a few creative solutions for the kids.

In the meantime Reagan overall was so much better...UNTIL the doctors decided they wanted us to try and feed her puréed foods. Two bites in she choked and turned blue. She recovered pretty quick, but her breathing was really labored after that. Since then she hasn't tolerated her tube feeds as well. She would arch her back, reflux, gulp formula back down, and cough. Then yesterday she threw up and started to turn pale around the lips and I knew something wasn't right. She also had physical therapy and the therapist pretty much just held her because she wasn't tolerating anything. She was working so hard to breathe at times it exhausted her. She fell asleep before her therapy session was over and slept for hours after.

The visiting nurse came and said she sounded so much worse than last week. She was getting pale around the lips at times, retracting in her neck and ribs, and using all the muscles in her belly to help her breathe. Over all she was struggling to breathe. The nurse called down to Boston to talk to the GI doctor and they said she needed to go to the children's ER. But first they said she needed to go to the closest ER and be transferred to children's. They were afraid she could aspirate on the drive down to Boston. So at 2:30pm we arrived at LGH. We left via ambulance at 5:30pm to Children's. We arrived at 7pm and spent the next 4 hours in the ER before they transferred her up to the floor. They have started her on IV antibiotics because she has pneumonia, most likely from aspirating her vomit yesterday. Until tomorrow she isn't allowed to eat at all, she needs to be reevaluated by the feeding team and see GI.

In this moment, I am sad, I am sad my baby is sick again. I am sad she is being poked and prodded. I am sad she has to be in the hospital instead of being at home with her family. I am sad Addison and Anthony aren't with us. I am sad for the life she is missing out on.  I am just sad and tired of all this back and forth. She made it 8 days at home this time. Hopefully there isn't a next time. Please pray and if you don't pray, please send positive thoughts to my family, we all need it.

I am gonna end this post with a bunch of pictures. All of them were taken in the past 8 days since Reagan's been home. They highlight the ups and downs. Here we go...

My girls are so happy to be back together. Our whole family is happy we are all back together once again. 

Reagan most times struggles to do the things other babies her age can do. She cant be flat on her back for any lengthy period of time because she will reflux  and hold her breath then have trouble breathing. She even struggles to sit up on her own unsupported.

The birthday girl and her baby sister! 

The birthday girl bowling for the first time!

Momma and Reagan while bowling. She didn't feel good and was pretty attached to me this day.

My girls and I snuggling at Addison's birthday party!

It was a long day, and she had a bad day. She finally fell asleep on me and I fell asleep with her!

This morning the girls spent time together smiling at each other and laughing, it was a great way to start a very long day.

Hugs!

Kisses!

Ambulance ride to Children's!

Upset after she got her IV in. She wanted nothing to do with anyone.

Right now she is sleeping, and I have updated this blog the best I can. Gonna get some rest and post more tomorrow. Thanks in advance for love and prayers!