Visits with doctors

You know when you take your kid to the doctor and there's that list of problems and you don't really ever read them. You read the first two or three, check no, then start skimming.  After that you just start marking no on all the boxes without even reading.  Well,,,I have to read all of them now and mark yes A LOT and if you say yes you go to the bottom and explain. I get to my doctors visits the full thirty minutes early so I can give them my three month olds long medical history. Just my new normal ;). It's ok, I'm ok. Just noticing.

I saw Georgia's GI doc today. If anyone ever has a child with reflux of gastro intestinal issues, man I cannot believe how wonderful this whole office is. Dr Gayle Horvitz is her GI doc and everyone, the other docs, the nurse practitioners, the nurses, and staff are AMAZING. The nurse I talk to on the phone all the time comes in to check on me, gives me a big hug!  She's the nurse who helped me get into the hospital after Georgia's nissen fundoplication slipped and no one would listen. Had a great visit. Want to do another weight check in a few weeks because she's failure to thrive, but so was Chloe and they never feed Georgia while shes in the hospital, so I'm not to concerned. She's already gained a pound in three weeks!

After the appointment I stop and get gas. Simple task, shouldn't be a problem. I only have cash, so i take out her whole seat to go pre pay. I get back to the pump and I'm thinking I just can't put her in the seat and pump, so I'm holding her seat trying to select my fuel grade and put the pump in then I put her in the front seat and talk to her while it's fueling. I'm sweating and exasperated wondering why I didn't just send Blake to fuel me up. Another mother across the station fueling up gives me a smile like, oh you first time mom,,,just leave her in the seat. I would if I could trust her not to choke as soon as I walk away!  The joys of motherhood. Just when you think you got it down, you get schooled.

Another cool development is a man in our church is a pain management doctor. He is also our home teacher, of course, because that's how Heavenly Father works. He puts people in your life who can help at just the right moment!  A home teacher is someone the LDS church assigns to come visit your family in the home to provide spiritual upliftment in the home, help, or a blessing. In essence, you always have someone to call when you need help. Anyhow, he's a D.O, which I'm having a hard time understanding exactly what kind of medicine he practices, but he's a specialist, and it sounds like pain management. I told him the spinal fluid theory and he said he suspected as much, and now I'm remembering he said that from the beginning. In his work, he does a lot of spinal and cranial work. He tells me he is trained in this kind of cranial manipulation. It's hard to explain, and there are very few docs who even do it. Chiropractic work is a branch off of it. He explained it as healing with hands. It sounds weird, but he goes to work on Georgia and it looks like he's massaging her head. He says the part of the skull that relates to the cranial nerves is tight. He massaged it and says he doesn't know if it will help, but it certainly won't hurt. He's coming on Sunday nights to do treatments on her!  Wonderful!

For all of you who think its cooky,,,when he was done with Georgia he tells Blake to lie down , he'd show him how it felt. He starts and says, "Huh, you are tight on this side, it's like you got slammed in the head recently.". Funny thing is, Blake got into another car accident this past Friday. That makes two in three weeks, luckily neither was his fault!  Anyway, he got hit upside that same side of the head with the airbag and he has had the worst headache ever since. Brother Higgins did his treatment and Blake said it was instant relief, headache gone. Honestly, after being somewhat educated on it last night, I don't know why more people don't know about it and use it. I have two people with chronic pain I want to refer to him!  I'm so glad he's helping Georgia!!!

Hope

Ok, I've decided I don't dislike all neurologist,,,I found another one I liked yesterday. He said there is still a fear this could be a progressive muscle disease. However, he says he would not recommend putting her through the tests to prove or disprove it. He said this could be cerebral palsy also, but there is so much of a spectrum, its immpossible to predict how it will affect her.  Cognitively & physicaly she looked fine, except a few tone issues (maybe,shes still so young and has had so many set backs) in her neck and cheeks.  Time will tell. The interesting thing is, he has treated a patient with similar issues. He cautioned me on getting too excited because these swallowing issues are so diverse and can be caused by a number of small issues. However, because of the similarities he thinks it's worth getting a spinal tap to make sure there is no fluid on the spine. That's what the other patients problem was and simple meds fixed her problem,,,,AMAZING!  It's a renewed hope!  I have to wait to get an appointment with the neuro who will do this test, then wait for the test. Georgia's ped is going to try to speed up the process. If you read this blog just pray from now until that time that something that easy could fix her problems. Either way, he gave her a script so we can begin to receive therapies and a nurse who will come into the home so I can have some help. So productive visit and we love our little toot no matter what the future holds!

Making time part dos

I think with four kids anyone feels strapped with their time. Add a little one with some special circumstances who needs extra care and your time is super strapped!  My mom wanted to take the kids over night last night and I decided it would be a good time alone with Blake, so I sent the kids off. They came home this morning a hot mess. Chloe walked in screaming my name all around the house. When she found me she was in tears. She thought i was at the hospital again. Ugh. Blake was heading out to church and was going to take the kids (I was staying home because Georgia had spit up that morning and was not tolerating feeds well. I kept venting her today and now she's fine tonight. Might have been something I ate back on August 5th ;), thats the milk i dethawed today)  Anyway, I told Blake to leave them at home because they were all whining and tired. We went into the preschool room and put puzzles together & played games. Georgia played on her quilt the whole time. When Blake got home after church Chloe told me, that was the best day of my life. Wow!  Sweet angel just needed some quality mommy time. I feel that Georgia needing less suction and tolerating feeds so well has allowed me a lot more freedom and I need to be wise on how I use that time. It's so easy to get caught up in all things Georgia, but the other children need me too.

Progress vs. Progressive

When the Doctors talk about this disease that they say Georgia has (that she absolutely doesn't have) they keep using the word progressive. They feel even though she's developing normal now, besides the swallow, the disease will progressively spread and begin to affect other parts of her body. So all week the word progress has been on my mind.

Right now, I'm seeing some definite progress. Georgia rolled over twice this week. When you hold her in a sitting position she totally supports herself. She's talking. It's so cute to hear because you can tell she loves the sound of her own voice. Infants with this progressive disease can't vocalize by the way because their vocal cords are paralyzed as well,,,,hmmmm ;). The most amazing progress, and I think it speaks volumes is, Georgia couldn't handle secretions when she left the nicu. Even on a strong dosage of Robinol to dry out secretions she would constantly choke on her own spit. I was looking into vital stim shock therapy for her (electrons placed on her throat, would provide a shock to stimulate those paralyzed muscles). Anyway, they told me they won't do it unless she can handle her own secretions. I have noticed she's getting better lately. I never have to suction, so I decide to take her dosage down to every eight hours, so three times a day. She handled that perfectly. So with my home nurses pressuring I took her down to every 12 hours, twice a day. Also, the dosage shes on was formulated for her at 8lbs, now shes 10lbs, so its a lighter dose than what she should be getting.  She's having a little bit of secretions, but nothing like before. I'm going to leave her here for awhile and let her learn to deal with it. Basically, this tells me she's learning to SWALLOW!!!  She's not drooling them out. Progress, not progressive!!

The other major progress is spiritual in nature. I had a friend tell me that she missed those moments and the time she had with her sick daughter because she felt so close to the Lord during that time. She said time goes on and you forget and life starts going again and you get caught up again. I'm having a friend write on my family room wall again. It's from Thomas S. Monsons talk, https://www.lds.org/general-conference/2008/10/to-learn-to-do-to-be?lang=eng. "May we, learn what we should learn, do what we should do, and be who we should be.". It's so simple and during this trial I've had such a desire to do this, just learn and do and be what the Lord expects of me. I've been surrounded by people who serve and love how we are supposed to.  Dinners, phone calls, texts, help with leaky basements and roofs, and a home visit to get my hair done. Service that helps me feel Gods love for me and my family. 

I want the quote on my wall because long after Georgia has developed and outgrown her problems I want to always remember, I want to remember to continue to learn, to do, and to be who I should be!  Keep progressing and growing in this life. We are all here for a reason, there is a plan!  If we learn what we should learn, do what we should do, and be who we should be there are great rewards!

Hairy ears,,,

I try not to be dramatic, but I'm seriously traumatized by all I've gone through these past three months. I had to see another nuerologist yesterday while trying to get Georgia into therapies and after all these dang nuerologist have told me, I don't like nuerologists. So as he's doing the exam I'm so nervous and just waiting for him to start saying scary things. I had mentioned I was worried about her grabbing her ears, so he takes a peek. He looks in and says, "WOW!", so urgently. I say, What!  I'm so worried. In a very serious voice he says, "her ears are very hairy!". Fear runs through my body. He doesn't look up and goes to the other ear, "wow!", he says again. My blood runs cold. "What does it mean", I say terrified. He look up and probably sees the fear in my eyes. He starts laughing, "it means she has hairy ears, nothing more.". I feel so stupid.  All last night I have terrible dreams about hair coming out of Georgia's ears. Oh man, I need a nuerologist!

He gave her the exam and she qualified for physical & feeding therapy!  Yahoo, she's finally getting some services!!!  He had no other suggestions except that as she grows and develops we'll know more about her diagnosis. Ok, I like one nuerologist ;).

Making time.

Tonight as I'm doing my nightly ritual of pre-measuring bottles of milk for the night so I can just dump them in as alarms wake me up I hear my hubby call from the next room, "Can you bring the toe nail clippers in?". I've always clipped my hubby's toenails, but not lately. I go into our bedroom very much annoyed about having to do this. 

As I start to clip his toenails my heart softens, service for others usually has this affect!  I start to think about his day. Blake got up early and attended 3 church meetings today. He came home cleaned my house, gave the kids their bath, and brushed teeth. This morning when he woke up he realized I'd been up for awhile and gave my sore shoulders a rub. He takes the kids to school every morning, and swims with them at night. Our flooded basement and leaking roof weigh heavy on his mind because all financial burdens fall on him. There's no days off, being a business owner means no fall back. 

I decide to rub his feet until I hear his breath go deep. I fall a little bit more in love and remind myself that my eternal companion is the most important person in my life. I need to make sure he feels that way. 

Reminders from Heaven.

Chloe's friend, one of my good friends daughters, got baptized today. I really wanted to go to support my friend and watch this sweet girl enter the waters of baptism. Such a neat thing to see and for Chloe to see. She's so sad she has to wait until she's 8 to follow the Saviors example. Anyway, we left the house at a quarter to nine and got back at 3:00. That's quite a big outing for Georgia Mae and for me, but we both did great!

When we got home Georgia was sleepy and hungry, so I got her feed going and put her in her little nest. I start to walk away to do some dishes when I get a gentle reminder to plug her into her heart monitor. I'm so distracted today that I put her pulse ox lead on and walk away without plugging it into the machine. Another gentle reminder sounded the alarm to remind me to plug her in. I walk away knowing this is not the first time I have had heavenly help in her care.  I've long been aware of the angels surrounding Georgia, protecting her on this journey, but in that moment I realize they're surrounding me as well. 

I have often wondered to myself and close friends, how will I keep this baby alive?  I'm not medically trained and even trained professionals have a hard time with her. I know that all that has happened; suctioning her as she chokes, knowing I needed to call a doctor when her nissen slipped, and performing CPR that weekend before her surgery cannot be credited to me. I was being assisted and prompted with heavenly help all along the way.

I have been given the great privilege to have Georgia as a daughter here on earth. Her life and a accompying miracles have touched hundreds of lives already. Whether her mortal mission is brief or very long, I know it was not in vain. Heavenly Father cares for her and has a plan for her as well. So blessed to care for this sweet daughter of God on her earthly mission.

Before returning home I saw a saying on my friends wall; "there is no foot too small that it cannot leave an imprint on this world".  Praying Georgia leaves many more imprints!

Going public.

Today Georgia had her first public feed. Yes, the terminology again sounds awkward as I say it, but that's still how it comes out. We went to church and I packed up enough for one feed and one dose of one of her meds. I expected her to just need the one feed, but ended up the last 30 minutes of her feed I started at home went into sacrament meeting at church.

I have breastfed three children and was very comfortable feeding them in any setting, except at church.  Maybe that had something to do with the weird feeling I had feeding her in sacrament meeting. I was always jealous of mothers of bottle fed infants that they could just do it right there and not have to leave to the mothers lounge. Ok, another plus ;). The weird thing was I kept having this feeling like, should I be doing this in the mothers lounge?!?!?

Anyway, I got over it and because she's on a schedule of 1 1/2 hours on and 1 1/2 hours off it wasn't long before I had to feed her again. I step out to the foyer to hook her up and soon there is a large crowd of women around me. Some stare from a distance, others stand close asking questions, others stand closer offering assistance where and when they can.

In a lot of my support groups and blogs and forums so many moms get worked up about the staring issue, I found I didn't mind it because I've been guilty of it. I think it's natural to be curious about something that is new or different. I have never been exposed to anyone with special needs and honestly when I've seen a mom and special needs child lately I do stare because I'm trying to get a glimpse into what life is like. Maybe next time I'll find the courage to stand closer and ask questions and offer assistance or just an ear.

Overall, feeding Georgia out and about was great. Only thing that worried me was the cord to the tube. Especially when everyone got out of church and the halls were full I was sure someone would become hooked on her cord. Im sure theres a way to prevent this.  Another question for my blog mommas!

Scheduling vs. kids needs.

I've never been a mom that stuck to a schedule with my kids. I was always more of a fan of letting my little ones tell me when they were hungry and tired. Before you knew it between your schedule, the other kids schedules, and the babies needs a good schedule would naturally evolve.

Now a feeding pump, a strict calorie diet, and three daily meds taken several times throughout the day forces me to schedule her like no ones business. I have a schedule written out and alarms that go off so no part of the schedule will be missed,,,not even by a minute!  If this little cutie isn't hungry I force feed her, I have a pump that puts food right in her belly, so I can. How convenient!  

So in the case of needs driven vs scheduling I was absolutely,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,right! Scheduling stinks!  For me anyways ;). Having your baby on a schedule consumes everyone's life in the house. I have now begun scheduling time to spend with my hubby and other kids.  Nope, can't read a book right now, not until 3:00, gotta stick to the schedule!  It sounds crazy, but it's true!!!  One misstep and your schedule is ruined!  Looking forward to more carefree days in the future!!!