First and foremost: PAUL GOT THE VISA IN THE MAIL!!!!!!!!!!!!!!!!!!! YAY!!!! Paul came down to visit July 9th as an anniversary gift. It was a wonderful gift! We relaxed around here for a couple of days and he was suppose to leave again on the 13th. However, we never like to stick to our original plan ( classic us...and story of our LIVES). So, when we got the call on Sunday the 11th that Steph was in Labor...Paul decided to stay for another week so that we could go visit Stephanie, Nick, and our new baby nephew, Kolbe. Also, we were asked to be his Godparents...and it worked out that Paul was in the states that weekend so that we could both attend his baptism. YAY!
We had an appointment on the Monday we got home. ( we got in at 6:30am! and our appointment was at 1pm....which we were late for.) We went in thinking again that we were here the same good news we have been hearing. Dr. Oppenheimner (sp?) (she is the head of the Spina bifida clinic) said that she looked GREAT...and super health. Poor lady could barely pick her up. Dr. Jackson, however, had different news. The results of the Urology test showed that her bladder is having spasms when only a small amount of fluid is in it. Your bladder is only suppose to have spasms right before you urinate. She is not emptying her bladder at this time, so these spasms are making her bladder wall thicker (the muscle stronger). You would think that having your bladder muscle strong, would be good, but i guess at some point it is not. SO....to give her bladder a break, we are going to start a Cath Program as soon as Paul gets back to the states. They said that this could maybe keep her from having to do it for her whole life. This again is our hope. We'll see! We are not super excited about this new news, but we were a little prepared for this at our last visit.
Anyways...i have to sign off of here, because it's late, and I have to get my babies home. Ciao for now!
Sunday, July 25, 2010
Thursday, July 1, 2010
Today......A Call from Neurology
HAPPY CANADA DAY!!! And Happy Birthday Mom! Today we drove all over Florence looking for a car for my mom and dad. We didn't buy one, but we test drove a lot. For REALLY not wanting a mini van...I L-O-V-E-D the Honda Odyssey. But, we weren't shopping for me. Anyhow, back to Claire's appointment.
Claire's MRI was yesterday. Oh my, she HATED being strapped down. Even though they put ear plugs in her ears, it was really loud and you could tell she was terrified by the way she was crying. Poor thing. She was really holding her breath by the time we got her out of there.
Today Dr. Maugan's office called. We are in the clear! Results of the MRI came back the same as last time. The ratio of the fluid in her head has stayed the same. Tracy, (our favorite nurse) said that when we go to the Spina bifida clinic in a couple of weeks, that they will freak out about how big her head is. But she said to "just tell them that we are ALL OVER IT!" haha YAY!
Claire's MRI was yesterday. Oh my, she HATED being strapped down. Even though they put ear plugs in her ears, it was really loud and you could tell she was terrified by the way she was crying. Poor thing. She was really holding her breath by the time we got her out of there.
Today Dr. Maugan's office called. We are in the clear! Results of the MRI came back the same as last time. The ratio of the fluid in her head has stayed the same. Tracy, (our favorite nurse) said that when we go to the Spina bifida clinic in a couple of weeks, that they will freak out about how big her head is. But she said to "just tell them that we are ALL OVER IT!" haha YAY!
Finding blessings in the little things...
Hey Everyone. Wow, it's been a while, and a lot has happened, but at the same time nothing has happened. Paul is still stuck in Canada, awaiting the return of his Passport with VISA inserted! Today (Thursday) marks 11 weeks since they the US Consulate received our info. (This is 7 weeks longer than we were told it would take). We have called, emailed, talked to US Senators, and other VIPs, and still nothing. Ah well...we are getting really really good at waiting! Patience is one virtue we have perfected.
On to more important information- Claire's Appointment.
Monday, the 28th, we met with Dr. Maugans for our routine, Neurology, check up. He said that Claire's head is still growing rapidly- 27 1/2 cm. At this age the growth of her head should be plateauing. However, after looking at the growth chart her head is WAY above where it should be. At the same time, it still matches her rather large body (22 1/2 lbs, and 27 1/2 inches long. at 7 months!) So, a little alarmed, he ordered an MRI. which we had done Wednesday. He said again that it could just be that she has her father's head ( i laughed a little on the inside), but it is something that needs to be checked into. He also started talking about her bladder and the results of the 3 Urology tests that we had done last month. The Urologist never called with the results, which I assumed was a good thing. We had a follow up appointment scheduled with the Spina Bifida Clinic in mid July, where we would see Dr. Jackson (Urologist), but they did act like it was urgent. So when Dr. Maugans, asked if we had heard the results of the Urology tests, i knew there was something up. He said that Claire has a Degenerative Bladder. I haven't done any research on this yet, but he simply said that her bladder is not working correctly. There is a 50 percent chance that we will have to start Cathing her. Also, as of 6 weeks ago her dirty diapers have been slowing down. She was going everyday, multiple times, and now is going every other day or less. (I know, TMI, right?) I just assumed this was normal....Ha...i didn't exactly chart Eva's dirty diapers. Soooo....we might have to put her on some laxatives. Ha, I must have looked really awful when i was in the office because both the doctor and nurses were really reassuring me when i got this news. They said , "she won't know the difference, this is just another way of living life!". So true. It was a little hard to take when you are constantly getting such great news all of the time. Even in hard times like these there are always blessings that go along with it. I've realized that especially this week. Though we are not all together, and Claire has a few minor issues, we are healthy, I have a wonderful husband and perfect babies, helpful and loving family and friends just a call away, and a Faithful God to always cry to. We are ok!
Please pray for good friends of the family this week.....A former homeschool family, with 4 kids dad just passed away this week. There mother passed away about 8 years ago. Their kids range from 22-11 years. I'm sure they are hurting terribly and could really use your prayers. Weeks like these really make you appreciate what you have. So, we are still blessed.
On to more important information- Claire's Appointment.
Monday, the 28th, we met with Dr. Maugans for our routine, Neurology, check up. He said that Claire's head is still growing rapidly- 27 1/2 cm. At this age the growth of her head should be plateauing. However, after looking at the growth chart her head is WAY above where it should be. At the same time, it still matches her rather large body (22 1/2 lbs, and 27 1/2 inches long. at 7 months!) So, a little alarmed, he ordered an MRI. which we had done Wednesday. He said again that it could just be that she has her father's head ( i laughed a little on the inside), but it is something that needs to be checked into. He also started talking about her bladder and the results of the 3 Urology tests that we had done last month. The Urologist never called with the results, which I assumed was a good thing. We had a follow up appointment scheduled with the Spina Bifida Clinic in mid July, where we would see Dr. Jackson (Urologist), but they did act like it was urgent. So when Dr. Maugans, asked if we had heard the results of the Urology tests, i knew there was something up. He said that Claire has a Degenerative Bladder. I haven't done any research on this yet, but he simply said that her bladder is not working correctly. There is a 50 percent chance that we will have to start Cathing her. Also, as of 6 weeks ago her dirty diapers have been slowing down. She was going everyday, multiple times, and now is going every other day or less. (I know, TMI, right?) I just assumed this was normal....Ha...i didn't exactly chart Eva's dirty diapers. Soooo....we might have to put her on some laxatives. Ha, I must have looked really awful when i was in the office because both the doctor and nurses were really reassuring me when i got this news. They said , "she won't know the difference, this is just another way of living life!". So true. It was a little hard to take when you are constantly getting such great news all of the time. Even in hard times like these there are always blessings that go along with it. I've realized that especially this week. Though we are not all together, and Claire has a few minor issues, we are healthy, I have a wonderful husband and perfect babies, helpful and loving family and friends just a call away, and a Faithful God to always cry to. We are ok!
Please pray for good friends of the family this week.....A former homeschool family, with 4 kids dad just passed away this week. There mother passed away about 8 years ago. Their kids range from 22-11 years. I'm sure they are hurting terribly and could really use your prayers. Weeks like these really make you appreciate what you have. So, we are still blessed.
Saturday, May 22, 2010
A question....Cute blogs
So I've been noticing that some people have some really cool blog backgrounds, that are not a part of the generic blogging list. How and where do you get these?
Thursday, May 20, 2010
Oh, I forgot...
"The Doctor Is In"....the Update
Monday: Claire had a Urodynamics done, to measure the pressure in her bladder and the tone of her muscles surrounding bladder. This was done by inserting a catheter in her bladder and rectum. She actually did really well and kept herself busy by sucking on a spinning light up toy. "Our Nurse" in neurology made sure to tell the people in Urology to keep the same catheter in for ALL of the tests, but they didn't. I didn't think it would be a big deal since she did so well with the first one, until she started inserting the second one. Claire started screaming, so then I got mad. I started thinking, " you were lucky with the first one, WHY did you push it!". But, the Cath of the second one actually was too big, so she was fine with a smaller one. For this test everything came back normal.
Second test, with the second catheter was a VCUG. They tech inserted contrast into her bladder to be able to see everything. They wanted to see how long she could hold her urine, see if there was any reflux into her kidneys, and then see if she emptied her bladder out all of the way. She started crying in pain a couple of mins after the bladder was filled with contrast, because she couldn't figure out to urinate with the catheter in, poor thing. After squeezing some warm water on her, she figured it out really fast. She had no reflux into the kidneys, held her urine well, but did not empty out her bladder all of the way. They said that this might be because she's under pressure, but they didn't same much after that. So, i'm not really sure what to make of all of that. No worries here though.
Tuesday: Sonogram of her kidneys and bladder. She was SO cute laying there on that huge bed getting an ultrasound of her little belly. It took a pretty long time, and she didn't like it much. She didn't give me much info, but again this is more of a routine check.
Visit with Dr. Maugan's -Neurosurgeon. Claire weighs 20lbs and is 26in long!! BIG GIRL! Since the doctor was so worried about us coming down, the had talked about us probably getting some imaging done on Claire's head. Well, he talked to me for like 5 mins, asked a couple questions, and said, "well she looks good, we'll measure her head again in 6 weeks, and then get imaging done in 3 months". WHAT DOC?!! Why couldn't we have done this over the phone!? They also measured her head at 45cm, not 46...like we had measured. Dumb sewing measuring tape. Remind me not to use that again. ha! Soooo...we traveled here with out Paul for nothing! GR! Oh well! It's better to get good news and be down here for "no reason", than to get bad news. Plus, who knows what God worked in that small amount of time. We continue to be blessed! Thank you all for the continued prayers!
Second test, with the second catheter was a VCUG. They tech inserted contrast into her bladder to be able to see everything. They wanted to see how long she could hold her urine, see if there was any reflux into her kidneys, and then see if she emptied her bladder out all of the way. She started crying in pain a couple of mins after the bladder was filled with contrast, because she couldn't figure out to urinate with the catheter in, poor thing. After squeezing some warm water on her, she figured it out really fast. She had no reflux into the kidneys, held her urine well, but did not empty out her bladder all of the way. They said that this might be because she's under pressure, but they didn't same much after that. So, i'm not really sure what to make of all of that. No worries here though.Tuesday: Sonogram of her kidneys and bladder. She was SO cute laying there on that huge bed getting an ultrasound of her little belly. It took a pretty long time, and she didn't like it much. She didn't give me much info, but again this is more of a routine check.
Visit with Dr. Maugan's -Neurosurgeon. Claire weighs 20lbs and is 26in long!! BIG GIRL! Since the doctor was so worried about us coming down, the had talked about us probably getting some imaging done on Claire's head. Well, he talked to me for like 5 mins, asked a couple questions, and said, "well she looks good, we'll measure her head again in 6 weeks, and then get imaging done in 3 months". WHAT DOC?!! Why couldn't we have done this over the phone!? They also measured her head at 45cm, not 46...like we had measured. Dumb sewing measuring tape. Remind me not to use that again. ha! Soooo...we traveled here with out Paul for nothing! GR! Oh well! It's better to get good news and be down here for "no reason", than to get bad news. Plus, who knows what God worked in that small amount of time. We continue to be blessed! Thank you all for the continued prayers!
We're here to stay
We're here to stay! We're just waiting for Paul to get here! At least, that is the plan. And you know what they say about plans: "God laughs when you make plans". Well, He has been laughing a whole lot, and we have just been laughing right along with him. We never know WHAT THE HECK is going on....I'm glad SOMEONE does though. It does teach you to really go with the flow of things, and not to be so uptight about the things you have no control over. I'd like to say that it makes me more laid back, and more trusting in God's plan, but I know I still need to work on that. It's a constant growing process, and constant denial of my "control freak" ways. It's been 6 weeks now, and Paul has been diligently checking the mail for his visa. NOTHING! It's very very frustrating, and we really don't know anything more than that.
On a brighter note, I bought two end tables for only ONE DOLLAR each today, and a 15 dollar Brissel Vacuum, that works really well! I was so proud of my finds!
On a brighter note, I bought two end tables for only ONE DOLLAR each today, and a 15 dollar Brissel Vacuum, that works really well! I was so proud of my finds!
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