Here’s the exciting new of the week…Violet rolled from her belly to her back this weekend!  I was so excited!!! She hadn’t done it before!  She rolled several times. She hasn’t done it since, but that’s okay…she can do it!  🙂

Her feedings have been doing very well.  She hasn’t been too interested in drinking her bottles but she is taking solids, so that gives me hope. 

We are still looking into what kind of wheelchair we need.  This is one of the hardest choices I have had to narrow down.  My supply guy is really great though.

Check out the events page for a couple of events that are just weeks away.  Hope you can join us for one of them!!!

Once again I am overwhelmed by peoples kindness.  Several times since opening this blog I have had this same theme.  I can’t help it.  It’s the truth.  It’s completely how I feel.  A dear friend (and a committee of her friends) are putting together another benefit for us.  The generosity and willingness to help from strangers is so overwhelming when you are in this situation.  I know that Vi’s needs are present, I live this life every day, but to have strangers so willing to do what they can to help just melts me.  I appreciate that there are so many people willing to help my sweet angel have the best possible life.  I know that is certainly what we desire for her.  We have been on this journey of the unknowns for 16 months and life has been exhausting to say the least.  I can’t think of a night since prior to her birth (you know NO pregnant lady sleeps through the night) but usually by 16 months of age you are starting to have been sleeping through the night again.  Vi still routinely wakes up.  She wakes up to play, eat, play some more.  On a good night Jake will feed her and then I will rock her back to sleep right away and we will not have to spend a great amount of time away with her, but on an average night…one if not both of us are up with her for several hours.  Some nights she just fusses…fusses until whoever is out with her can’t take it anymore and goes into get the opposite.  Sometimes we just leave her to fuss, but some nights she is SO upset you can’t leave her.

So although no one really knows what it’s like to be us…on this journey of unknowns…the open & willingness to help to whatever is possible to help.  Two of our dear friends have offered to watch the girls so Jake & I could take an overnight get away.  I trust these 2 ladies so much I will certainly take them up on it, but we have to come up with something to do…I don’t want to just “get away” and not have something fun.  Sitting in a hotel just to get away doesn’t sound like much fun.

How could we not be so grateful for the wonderful people that God has put into our lives.  He gave us this beautiful daughter for a reason…He knows WE  are the best parents for her.  I have to be thankful that we have been given this opportunity to express our faith & our love.

1 Thessalonians 5:16-18 states, ¹⁶ Rejoice always, ¹⁷ pray continually, ¹⁸ give thanks in all circumstances; for this is God’s will for you in Christ Jesus.

Have I always been super excited about this journey…excited in the middle of the night when all Violet is doing is screaming…NO….if I said that those moments were great ones…man…my nose would be longer than Pinocchio!!!  But in the morning, when I wake up after getting a few more hours of sleep and I am holding this beautiful little doll and she is looking back up at me & jabbering (and in my interpretation saying, “I am sorry mama, I can’t help it, but thank you for loving me so much”) my heart melts again and I am reminded that everything is the way it is supposed to be.

I am sure that this will be another entry later, but honestly, all Jake & I can say is thank you– I often feel that isn’t enough….I know if a friend of mine was in our situation I would certainly want to do whatever I could to help and who knows maybe years from now when life seems…normal…ha!  Will that every happen? I will be able to do the same for someone else.

So thank you….thank you for all your thoughts, prayers, support & encouragement.  Whether you are putting together a benefit for us or just see us & encourage or pray for us…know that we are thankful!

Well, We have had the G-tube for almost 2 weeks.  I am beginning to wonder if we shouldn’t have done it sooner but we can’t go back on the “shoulda, coulda, woulda’s”.  Vi is doing rather well.  Every day she eats a little by mouth. Today for lunch I got her to eat her applesauce but not drink from her bottle.  I personally don’t care what she takes as long as she tries something every feeding.  One of the questions that many people have asked is “how long will she have to have the feeding tube?”  Honestly, I may never get rid of it!  We never have to fight with her to take meds, if she is having a stubborn day we can still get nutrients in her, if she gets sick and we need to get fluids in her, we don’t have to worry about an IV – we can put the fluids in her tube.  The list honestly goes on. 

I have to admit, I was against it a year ago.  I wanted to see what Violet could do, on her own, without the aide of a device.  But man, am I glad we have it!  For a parent who doesn’t want to get one….I was there!  Like I said, I was totally against it –but 2 weeks into it…I wouldn’t go back for a second!

Getting used to the morning routine is a challenge.  Vi still doesn’t sleep great at night so getting out of bed in the morning is still a challenge.  I really need to get up when my alarm goes off because I need to start Vi’s feeding at the same time I wake up Grace for the day, but I can’t do both things.  If only I could get up 15 minutes sooner….that 15 minutes will be even earlier in 2 weeks as my work schedule changes & I will be going in 30 minutes earlier.  While I am looking forward to that I will stress in the beginning on how I am going to get everything ready.  Phew! 

Well Vi & I came home on Wednesday.  Things are gong really well.  She seems to be very happy since we have gotten the tubes (all of them) and increased her calories.  I also found out while in the hospital that Vi can tolerate more than we thought!  One night I accidentally poured all her meds in 4 ounces of boost, which doesn’t seem so bad since that was her normal volume, but what I haven’t told you yet was I already fed her the milk (2oz) so we are looking at a volume of 6 ounces!  And guess what!?!  She did just fine!  I did give her about a 20 minute break in between but still.  She did really well.  So I have increased her volume an ounce and that is strictly water since everyone wants her to have more water. 

So, I am not sure what is so great about the hospital bed…but Vi slept amazing while we were in the hospital and once we got back home…she is back to her usual tricks of not sleeping!  But she is pretty stinking cute now that we get to see her face all the time. Her pretty little, kissable cheeks.  Love it!

Grace was pretty excited for us to be back.  She  definitely missed both of us but she is quite attached to her mama — that’s for sure! 

So many of you have been holding your breath with me for the post operative over night update.  Violet is doing AMAZING!!!  We started to give her some Pedialite through her g-tube last night and she is tolerating it just fine.  Surprisingly enough her IV is still in too, although she was really trying to get it out last night and the nurse said she is at the point where she either should retape it because it’s dangling or we just let it dangle and it will eventually fall out….I say let it dangle.  She is tolerating her feeds just fine & today we will start nutrition…why keep the IV????

I am proud of her though because Lab came in and drew her blood and she didn’t even budge…I should’ve gotten her name because she did a fabulous job!

So the big question: any signs of seizures???  Nope, not a single weird twitch!  Thank you all for your prayers and support!  God hears our prayers and He answers!

Violet went down for surgery around 7 this morning, with a 7:45 start time.  She did great.  Total time for both surgeries was about an hour and that included possibly needing to start a new IV, this wasn’t confirmed. Jake and I got to go back into the recovery room with her and then we went up to her room.
She is doing pretty good, they did give her an extra dose of seizure meds so she is a little sleepy today but that is okay, it will help her heal. The literature on the ear tubes says that her ears could be sensitive for 3 days to 1 week. She can start to wear her hearing aids right away. One of the things that the ENT doctor said was that she might be a little more sensitive to sound since there is a clearer path to hear, she seemed a little irritable earlier and now that her hearing aid is out she seems a little better so I am not sure if it was bothering her or not.
Her belly should still be numb today, they do some sort of a topical numbing so she can’t feel too much there. I’m already looking forward to the smaller tube…this peg tube is HUGE (long) We did get to burp her and she seems to be pretty happy since then 🙂
So far her IV has lasted but we haven’t held her either so that could be why. I know the nursing staff said we could hold her and they could try to board her foot and make it so it would stay but honestly if we want to guarantee that IV to last longer we need not hold her, but I will admit I am yearning to snuggle with my little sweet pea.
Tomorrow we will start to feed her and I am excited to see how that goes.
I will keep everyone posted on how things are going later if we have any changes or tomorrow.

So here we are, nothing too exciting to report.  We have gone through the admission process with the nurse and the intern.  One of the gals taking care of us today was one of the same people (whom I liked last year) and the other is new. 

Violet just took a catnap and we’ll see if she will wake in a better mood.  She was a little cranky before.  I strung up some toys using the connector rings to her crib and hung some toys from them.  At least that gives her something to play with.  Might not be her same toys she is used to at home & daycare but it’s what I have to work with. 

One of the things I have noticed with her at home & hear is music.  She responds well to music.  Like I said she was getting a little fussy and I put on her music and she started to settle down.  I have done this at home also.  Mostly at night when I want to go back to sleep and she wants to be awake.  I have a section on my iPod that is instrumental music that I put together when Grace as a baby and Violet has taken an interest to it.  It soothes her nicely.

I guess Dr Park, our GI doctor will be by later.  Not sure what time surgery will be yet, but I am guessing since we are in the hospital she will be one of the first cases.  So we’ll see when I get that info. 

Did express my concerns about the IV to the nurse since we have had quite the history here before.  I don’t feel like doing that again.  I know the importance of getting an IV started with her but I know the challenges we face also.  They never last long & if they want one for the operating room, they need to hold off as long as they can.  She, since birth, has been hard on IVs, they rarely last more than a few hours and they are difficult to get.  I mean, DIFFICULT!!!  Considering our last hospital stay it took Anesthesia to get it an within 3 hours it was gone.  Probably before that since she had been really crabby for over an hour…I finally told the nurses to take a good look at the IV and sure enough, her foot was triple in size….how long had it been bad????  Sometimes I will have to be the mama bear vs the nice mama.  I will not let them use her as a pin cushion.    I’ll keep you posted on that 🙂

So many people have asked me what is the plan for Violet. Her & I will be heading to Marshfield on Sunday…day after tomorrow!!!!  for the G-tube / ear tube placement.  She will have her surgeries on Monday morning and honestly I’d be lying if I said I wasn’t nervous just a bit.  I am no so much nervous about the actual procedures.  It’s the post op that scares me.  For those that remember it was last year at this time that Violet underwent a pretty simple surgery to fix her kidney and 12-18 hours post op Violet started having uncontrollable seizures. She has been on medication for the seizures since but it scares me just the same.  My prayer is that it was an isolated incident but I am fear it wasn’t and we will have to deal with it again.

I will keep everyone updated on how things go after surgery.  I’ll probably even have some rambling thoughts to enter on Sunday night as I am sitting in the hospital with my babes.  Thank you for your prayers!

I was blessed with the opportunity to attend a conference the last 2 days for parents / caregivers of children with special needs.  A friend told me about it and I really enjoyed my time.  Jake was able to join me on Thursday and I went on my own today.  While I was glad that Jake got to go yesterday and learn about some of this stuff too I really enjoyed the connections I made today.  There were 2 moms that I got to know today and I know they will be friendships that I will keep for a long time.  Our children’s needs are completely different but the relationship we developed was huge. 

I didn’t know that I would make these connections, of course I always hope to make connections with people who have similar needs or have a situation that I can relate too but really I went to learn more. To learn more about all the programs that are out there & available.  It’s insane what a parent goes through right after you have this “special child”.  I know it’s different for every child but we were handed this packet of brochures…what does all this mean????  I remember being given a list of programs that are out there and being told the things that we should apply for.  Looking back I think I nodded my head and didn’t remember anything.  It’s all so overwhelming.  15 months later it’s still so overwhelming!  My goal:  to put something together after talking to parent and my own experiences to what the most important things were to do in the first 3 months, 6 months, year and so forth.    The programs that didn’t really seem to work.  While I believe these programs are meant to be good.  I truly believe some of the best connections I have made are not the people that someone else has set me up with but those real connections I have made.  I know I was blessed with having people come into my life slowly, some before we even had Violet, some people I have made better connections with since having her and those strangers who I wouldn’t have met as easily before her.

I want parents to not be so overwhelmed by what everyone is telling them they need to do.  Yes, this process would be another ” how to book” someone’s opinions on what they need to do, but I think when you have someone who has done it, gone through it…it means more.  I think it would be beneficial to have a peer to help you along this process.  Some of the difficulties I feel are just knowing where to start.  I feel so dumb when it comes to all this stuff.  It’s so overwhelming!  There are so many programs out there…some you need right away…others not so much…AAHHH….where does one begin???

Talking to the professionals helps, but talking to the parents, those who have walked that similar road before that have been the most help!  Those conversations I treasure the most.  Those conversations I yearn for more.