Thursday, September 23, 2010

No surgery...again

Where has the time gone?  I'm not sure.  It's been so long since I've posted anything.  We've had so much going on that I don't even think I could write it all. 

We've been busy, busy busy now that work and school are back in session.  Homework. Reports. Deadlines. Dr appointments. Sports. Ugh!  I get tired just thinking about it all.

My family and I have been going through a bit of a difficult time.  After all, it's not easy in a family of 6.  Meanwhile, I have been feeling like sort of a shell of myself.  Its kind of like I've been watching my life from above.  Like I haven't really been living my life or have only been present for glimpses of it.  Not sure where this recent feeling is coming from and I don't even have the energy to guess.  But, overall we are all healthy, we're all getting along great and we're making it.  We know how blessed we are and we know things could always be much worse.  Just continue to pray for us please.

Kennedy update--she did not have her surgery on Sept. 9th.  She was not feeling well again and had a cough.  We are frustrated to say the least and ready for the surgery (tethered cord surgery).  The surgery was rescheduled for a day in Nov.  She is feeling well now though.  And by feeling well I just mean no cough.  Recently I've been worried about her muscles though.  She is growing and getting taller, but she doesn't seem to be getting stronger.  She is starting to refuse to bear any weight on her legs and she gets tired and starts crying after sitting on the floor for only short periods.  She also has bouts where she cries and is fussy for a whole day or two and we can't figure out what's wrong with her.  She's still only drinking Pediasure with fiber and eating no solids--she's 19 months.  She does have interest in solids, but she can't tolerate anything of any size without choking or just letting it fall from her mouth.  But, this past Sunday she ate a few bites of mashed potatoes and it. was. awesome!  I'm still waiting on kisses and dancing to music and consonant sounds.  Those are my top three.  Crawling would be great too, but those are my top 3.  But, until those come I will be thankful for smiles that tell me she knows I'm her Mommy and my giggles that she gives me freely. Love that girl!

Saturday, September 11, 2010

No Surgery

(Originally posted 08-20-10)  Sooooooooooo, we got all the way to Louisville, after a 2.5 hour drive. We arrived at 3:30 am, slept for 3 hours on my sister's couch and got up bright and early to go to the hospital. Kennedy had been weighed, measured, on monitors, and family in place when the anesthesiologist came in and announced that the surgery would not be happening. Yeah, that's right NO SURGERY!! Apparently they have a policy of waiting 2 weeks after a respiratory infection before they will conduct any type of surgery. Kennedy was hospitalized for a respiratory infection 1 week ago and she still had a small cough. So, NO SURGERY! It was funny because they asked my husband how long Kennedy's had the cough and he replied, "all her life".

We were informed that we would have to do this whole production all over again in 3 weeks. Pack 6 people for 4 days. Take off work. Get sitters for the other children. Make reservations at the Ronald McDonald House. Have family come from Madisonville & Indianapolis. Reschedule meetings all over again in 3 weeks. No problem we said (actually we didn't, we fussed, then complied).

So, our journey continues on Sept. 9th. Thanks for all the messages, emails, text messages, calls, and prayers from you all.

Love you guys,

The Price Family

Next Journey

(Originally posted 08-18-10)  This post is going to be quick, so that means probably full of errors. We are continuing our marathon in the Kennedy race. To update the 4 people that actually read this blog: Two weeks ago I had to take Kennedy to Louisville to have a sedated CT scan and x-ray. The CT scan is something that her neurologist requires before performing surgery. Last week she was in the hospital for 2 days for an upper respiratory infection and asthma. She is home now and doing quite well. She is having surgery on her spine in the morning. I should be on my way to Louisville right now, but I've procrastinated as usual and I'm not even at home packing. I was assuming (and you know what happens when you assume) that the surgery was outpatient because we're registering at the Outpatient floor and the doctor's office never told me otherwise. Well, I called the doctor's office after my husband urged me to in order to find out what time we'll probably be going home. That's when they told me that the surgery would require a 2-3 day stay in the hospital. WHAT!!! 2-3 days? I had not planned on 2-3 days. I had planned on going up the night before and leaving the day of surgery. That's what happens when you assume.

The nurse I talked to was very nice. We even talked about my daughter's birthday party, which is supposed to be this Saturday. "Should I cancel the birthday party? My other daughter is turning 4 and it's on her actual birthday." She informed me that I should in fact cancel the birthday party. The party I can cancel, the birthday I cannot. I have never been away from any of my children on their birthday. I am their mom after all. What to do? I have meetings scheduled for Friday--- you know, the day after I thought I was coming back. This change in plans has thrown me way off. So now, I have to figure out what to do with my other 3 kids, what to do about Destiny's birthday party, cancel my testing at work, get someone to cover my meetings, do my paperwork before my meetings, pack for 5 people for 4 days. Can you say AAAAAAAAGGGGGGGHHHHHHHH!!!!!!!

Thank God that I have some of THE best family there is to have. Thank God I work with some of the BEST people there are to work with. They love God. They love me. They want what's best for me and my family. It's awesome! God knew what He, in His infinite wisdom, was doing when He put me in this family. He knew what He was doing when He put me in this job. I have had many opportunities to leave my job and leave my hometown, but it has not been God's will. He has shown me time and time again that He will bless me for staying in His will. "For all things work together for the good of those who love the Lord and are called according to His purpose." Don't know if I quoted that correctly. Don't care. And don't have time to look it up. All I know is that I am called for His purpose and things are, and will, work together for my good.

Continue to pray for me and my family. We'll take all the prayers we can get. Pray for my baby Kennedy and her surgery. After the surgery she has to stay on her belly for 24 hours and if you know Kennedy, getting her to lie on her belly for 24 minutes is a task! She will cry. She will whine. She will scream. There will be weeping and gnashing of teeth involved, and that will be her parents! So, again, please pray for us all. Pray for our journey.

Thank you and God bless you on YOUR journey!

Get to know us

(Originally posted 07-27-10)  I am learning that keeping up with a blog takes some work! I don't think I realized what I was getting myself into. And the intimidation! Wasn't prepared for that. So many great blogs out there with so many followers. But, that is not the motivation for me.

I started this blog as a form of release, but not just that. I realized (actually I was told) that I am a difficult person to get to know. When I first heard that, I didn't know how to take it. Be offended? Disagree? Maybe. But, then I thought about it and realized that there was truth to it. So, I am using this blog as a way for people to get to know more about me and my family. This is not easy for me because as one who is difficult to get to know, I am a guarded person. I am private not because I want to keep secrets or keep people out, but it has definitely become my defense mechanism for me. I am terribly afraid of rejection. And, as one who is afraid of rejection, to me rejection comes in many forms. It could be anything from the person at Wal-Mart who does not return my smile and wave to the least little thing such as someone who looks at me strangely when I share my point of view. Is that rejection? Not sure. Anyway, I have decided that this blog is a way for me to safely let people in to my world.

Another reason I started this blog is because I wanted to be able to share what's going on with Kennedy. If I had a nickel for every time someone asked me, "How's Kennedy?" Well, let's just say I'd be on vacation right now. But, I found that I either didn't tell the whole story because I had to tell it so much, or was telling part of what happened to some people and other parts to other people. When you have as much going on as we do, it can get discouraging dredging up the same sad stories over and over.

Sharing parts of myself is not that easy for me to do so I'm asking my readers (if I have any) to bear with me. Nevertheless I am learning that, the more I blog the easier it gets and the better I feel about sharing my life. Life is a journey, but that journey is what you make it. I don't want to die with only a couple of people knowing the real me. So, feel free to email me or ask me questions or leave me comments. I am not offended easily and have never minded be asked questions. God bless you!

Drive me Crazy

(Originally posted 7-21-10) Today I am back at work, somewhat in the swing of things, I guess. I can tell by today that I am not ready. I miss my babies! They drive me crazy while I'm there, but I miss them when I'm not there. Knowing how much I do miss them when we're apart is part of what keeps me sane when we're together, if that makes any sense to anyone. I mean, our house is HECTIC (part of that poor planning and housekeeping on my part, I'll admit), but that's what I'm used to now. I always tell people I do less work at work than I do at home.

I keep telling my husband that I would love to work part-time to be able to stay at home with the kids and do everything that keeping up with home requires. Just keeping up with Kennedy and her appointments is a full-time job. For instance, I keep saying that I am going to start a medical journal for her so that when we go to the dr. and they ask me a question such as, "When did Kennedy get her first set of tubes?" I will actually have an answer for them instead of my usual deer-in-headlights look. Then I embarrassingly reply, "We go to the doctor a lot." I would like to have access to that type of information when I need it. So, I pledge to start a medical journal for my baby Kensie as soon as I'm done with the housework. (Which, if you know me, that will be a long while.)

Random Thoughts #1

What in the world made me have 4 kids? My husband and I ask ourselves this all the time. It took a long time for us to adjust to life as a family of 6. The twins were born just a few months after we were married, so needless to say, no honeymoon, no fairytale wedding. Nevertheless, we continue to be blessed every day. Our life is certainly an adventure! We could easily be a hit reality show with loads of drama. But, no way could I put my life out there for the world to see! No way! But, I have noticed that the older I get, the less I care about what other people think. There's no such thing as the perfect family or the perfect mother. I certainly don't fit that description. But, I do love my kids and they're happy and healthy. I try my best every day and that's all you can do right?

Hip Brace

(originally posted on 7-20-10)  Okay, so the next phase of our journey with Kennedy has begun. She went to the dr. on July 6th who did an x-ray of her hips. We were told that she has tight adductor muscles, whatever that means, and one arch is higher than the other. So, they recommended a hip brace for her. She's very tiny, so I can't imagine this tiny child with a huge hip brace. But, we'll see!

Well, today Kennedy got her hip brace. It's not too bad actually. I'll have to upload pics soon. It fits really well. I'm not exactly sure what it does, but we'll see. A different dr. that she saw today also recommended that she be followed for her hearing. They could not get conclusive results on her hearing test in her right ear today. She's never passed a hearing test since she's been born and she's had at least 5 that I can think of. Here in KY we have the Commission for Children with Special Health Care Needs. I don't know what other states have this program, but it's great! They have specialty clinics for kids with special needs and it is all income-based. Every day is a different clinic. So, today we went to the craniofacial clinic and there were only kids with special craniofacial needs there. Kennedy is currently in the craniofacial clinic, orthopedic clinic, neurosurgical clinic, and they told us today that they want to add the otology clinic. Today, they also recommended that Kennedy begin seeing a speech therapist for speech/language as well as feeding and swallowing. They are very concerned that she is not yet drinking from a sippy cup, which is apparently delaying her cleft palate repair. Since she has a 1st Steps meeting tomorrow, this should be easy to add. The only thing is adding another service will decrease her current services. I don't think she can really stand to decrease OT or PT. We'll have to think about that one.

Though I do love the CCSHCN, it is in Louisville, which is an hour ahead of us. They usually start the clinics at 9 so we have to leave the house by about 5:00 am. We also have to figure out what to do with the other 3 kids. Sometimes we take her twin brother, other times one of us just takes Kennedy and the other stays with the kids. Today, I took Kennedy to Louisville for 2 appointments and my husband stayed home with the kids. Then, I rushed back so that he could make football practice by 6. It's a huge hassle, but it's definitely worth it. We're definitely blessed to have a program like this in our state, even if it is 2 and 1/2 hours away.