Sunday, January 4, 2009

It's been a while...

Ok, so it has been 2 months since I posted on here last. But, I have to get better about it. Call it my 2009 resolution!

First, I will update you on Piper's clubfoot progress. On Dec 19th, we went to Dr. vB, and Piper was put into her Ponseti-Mitchell brace. She is to wear it 22-23hrs/day. She tolerated it pretty well for the first 2 days. Then, blisters started on each of her heels. They were closed blisters at first. We called the doc on 12/23, and he wanted us to come in to make some adjustments to the brace. Well, it was 2 days before Christmas, and making the trip again that soon was just not an option. So, I told him we could come in on 12/29, and we would watch the blisters and keep him updated. He agreed.

Well, Piper's first Christmas present was that the blisters opened on Christmas morning. When Bud was changing her diaper, he noticed some drainage on her socks. So, we decided to leave the shoes off. I know, a big no-no. But, what were we to do? Her blisters were rather red around them, and they just looked painful. It would have been cruel to put the braces on. So, she was braceless for Christmas, and the next few days as well. I did call the on-call doctor on the 26th, and he said to try to pad around the areas, but it just was not working. I consulted with some good resources at work, and we were able to cover the blisters with some skin prep and foam.

We took Piper back to the doc on 12/29. The doc did make some adjustments to her brace. The first and largest adjustment was he turned her shoes in 10degrees (now set at 50 degrees abduction). He also put bandaids over the scabbed blisters, and left socks off for the first day back in the brace (so we could keep a closer eye on the areas). At first, he put the shoes on with out socks, without the bar attached. He really could not see why she had blisters, as the spots were not even touching the brace (they were near the tiny holes in the back to look through). But, as soon as the bar got attached, her feet slightly rotated inside the shoe, and they pushed right up against the braces. Her right foot was pushing so hard that her heel was actually white from the lack of blood supply (like when you push on your fingernail and it goes white). So, that was why he turned the shoes in 10 degrees. When he did that, the pressure came off the areas. Also, Dr. M from Iowa had said to me in an email that complex/atypical clubfoot cases he usually starts out at 40-50 degrees abduction. So, now we're on track with that.

Speaking of Dr. M - I had mailed him some pictures of Piper's feet when she went into the brace. I was just not comfortable still with the appearance of her feet. He said they look OK. He said that her feet will "take on a more normal appearance" when she starts standing/walking on them. I sure hope that is the case. Her left foot still seems to turn in quite a bit when she is out of the brace for the 1-2 hrs during the day. Dr. VB also said that the left foot had tightened up quite a bit for the couple of days that the brace was off when the blisters were open. He wants us to stretch her feet daily, and he said if her feet are not loose enough when we go back in a couple weeks, then he may need to cast her again to stretch them out. Ugh.

So, we'll go back in a few weeks, and hope for the best!

Saturday, November 8, 2008

Email from Dr. Ponseti

I had emailed Dr. Ponseti last week (he is the "founder" of the preferred method of treatment for clubfoot). I was concerned that Piper's clubfoot was atypical. I am not sure what I was basing this on - except that her feet appeared "shorter" than the other kids' feet. I included a couple pictures for him. He responded yesterday. He said that there is a crease on Piper's left foot on the lateral border (outside of the foot) that reflects that her foot is overabducted (turned out too far). This was a concern that I had, before he even said it. I told Bud the morning of the tenotomy that I "did not like the shape of her foot." The inside edge of her foot was almost curved. If you look closely at some of the pictures below, you can also see the crease on the outside of the right foot that reflects that overabduction as well. Dr. P. said in the email that these should be corrected before the tenotomy.

So, after getting the email, I of course was a bit freaked out, and quite honestly sick to my stomach. Piper HAD the tenotomy. This email did not reach me in time! So, after a suggestion by another clubfoot mommy (thanks, Jenny!) I called Dr. P's office in Iowa, and spoke with his nurse (I believe) Maria. She explained that there is not really anything to do now. But, we need to look for those creases when the casts come of in 2 weeks. We need to mention them to the doctor when the casts come off. Maria said that we are more than welcome to come to Iowa for another opinion. I explained that was not really an option, but that we would consider Philly Shriners, if need be. She said that Dr. VanBosse in Philly comes highly recommended and that would be another option for us. Maria said that if we do not feel good about her feet, then we should take her to Philly.

We are going to leave that option open. I just do not want her feet to be "messed up" by less than optimum treatment. It's just scary.

I have put too much trust in these doctors. I told Bud a few weeks ago that I just have this gut feeling that it will not be done in December. That she will not go into her braces at that time. It's just a gut feeling, but after hearing that her feet were not in the right position prior to the tenotomy, it's just making that gut feeling more of a reality.

Only time will tell...

Thursday, November 6, 2008

Tenotomy Thursday

Our day started off VERY early! Our appt in Syracuse was supposed to be at 10am, but Dr. Palomino had a family emergency. They called Wednesday afternoon, and offered us an appt with Dr. Katz, a Ponseti-certified doctor in the same office. But, the downfall was that we had to be there at 7am! So, we got up a little after 4am (well, Piper and I did). Bud allowed the alarm to go off upstairs for 27 minutes! I went up to take my shower (still have not slept upstairs since bringing Piper home). I woke him up. He said he never even heard the alarm! We got all the kids up, and out the door by 520am. We dropped Hailey off at my Mom's (so she could get her to school), and we got to Syracuse just in time!

They put EMLA cream on the backs of Piper's heels, and let that sit for about 45 minutes before the procedure began. This is a numbing cream, and they said it penetrates enough to numb her for the tenotomy. I took Piper back, and Bud stayed in the waiting room with Macie and Sam. The procedure took about 15 minutes. Piper screamed through the entire thing! She usually screams through the cast changes though, so it was really no different. They then put on new casts - which are much heavier than the last few have been! I think they went extra sturdy on her since she is "fiesty" - that was the doctor's description! The doctor said that her left foot is still a little more tight than she thinks it should be. So, instead of the casts staying on for 4 weeks, she wants her to go back to her regular doctor in 2 weeks. That way, they can stretch her heels a little more. Then, she'll get casted again for another 2 weeks. The other reason she wants to recast in 2 weeks, it will allow for a little more correction in the left foot, since it did lose a little correction without the cast on for 2 days.

Sam was an absolute terror at the doctor's office. I was not out there, but heard about it from Bud! He was spent by the time we came out!

Wednesday, November 5, 2008

Female Hercules

So, I finally got to get out on my own Monday afternoon. Nothing super exciting, but did not have to take any of the kids with me! First, I went to The Medicine Shoppe, as they carry the gripe water that we wanted to get to give Piper. I bought the bottle, and headed to the grocery store. When I got home, Bud asked when we were supposed to go to Syracuse next. I said Thursday - he said, "well I think we need to go tomorrow. Piper slipped out of her cast!!" Of course, it was just after 5 by this time, and the MD office was on answering service. So, I only got to talk to the resident on call, and he said that we "could" leave the cast on, and just call Dr. Palomino's office in the morning. We decided that Piper was not uncomfortable from the cast, so we were going to leave it on unless she got unusually fussy (when the casts are left off, then the feet can lose some of their correction).

Right foot - did not slip out of cast:

Left foot slipped out of cast:

We gave Piper the gripe water before bed. It's an herbal type remedy for gassiness. We had given it to Macie when she was a baby, and it worked wonders! I was getting the dose ready, and Sam came out from nowhere, and I went to grab the bottle, and I knocked the stinkin' thing over!! About 1/2 the jar spilled all over the kitchen table. At $12.99/bottle, I did not want it to go to waste!! So, I passed Piper to Bud, and starting sucking up the gripe water off the table with the syringe! I was luckily able to salvage most of what had spilled!

So, it seemed to work well. Piper seemed a lot less fussy in the evening, and she settled for bed about 10pm. I put her in the bassinet, and hoped for the best. I fell asleep very shortly after laying her down, and I woke up on my own a little after 3am! I laid there thinking that she was going to wake up at any minute, so I did not attempt to go back to sleep. After 30 minutes, she still had not woken up, so I decided to pump. Then, I laid back down, and she slept until 440am!! More than 6 hours! It was wonderful. Just about when she was done eating, Samuel came downstairs. So, I carried him back upstairs to lay down with Bud.

I went to change Piper, and noticed that her cast had slipped quite a bit more, and now her knee was sticking out from the top of the cast. I decided it was time to get it off. I was going to soak it off in a mason jar, as had been suggested, but decided that was going to be a difficult feat on my own. I had to wake Bud up for assistance. Not too happy about that, was he!!

Instead of the mason jar, we decided that we would soak a tube sock in warm water and vinegar (also suggested), and put that over the cast. Then, we put her leg in a large ziploc bag, and Bud held her for about 15 minutes. In the meantime, she wriggled her leg enough, that with a gentle tug, I was able to pull the cast right off.

At 830am, when the MD office opened, I called up there. They said that she gets to go cast-free for the 2 days until her tenotomy! I was excited that we got to see her little leg, but bummed that I still did not get to give her a real bath! When I held onto her, she would go to relax her left leg, and as soon as it touched down on something, she would lift it right back up. I guess her foot is rather sensitive!

Piper turned 1 month old yesterday. I cannot believe how quickly the time has gone by!! Here are some shots that I took to commemorate 1 month...

Saturday, November 1, 2008


Halloween was a little crazy this year! Piper and I each had doctor's appts. We packed up all the kids, and headed out for my appt first. Bud stayed in the car with the kids, and watched a movie while I saw Dr. Agneshwar. He just wanted to check on my incision. It has healed up pretty well, except for a small "pucker" spot in the center where it had opened back up a few weeks ago. Oh well, so much for a clean scar! We did talk about some of the research I have done about clubfoot, and told him that about half of all cases find out about the clubfoot from an ultrasound during the pregnancy. I also told him that I never really considered the possibility of one of my kids having clubfoot, so I never specifically asked the ultrasound tech to look for it. I told him too that most of the pictures that I have found, and people that I have talked to on the Yahoo! nosurgery4clubfoot group who have found out via ultrasound - it was 3D. So, he said that he is going to look back thru all my ultrasound pictures to see if he can see anything. Hindsight is 20/20. It would not have made a huge difference to find out beforehand, but I could have at least have done all this research in the months before she was born. We would have known to not start treatment locally, and we could have headed to Syracuse right off the bat.

After I finished up at my appt (still have to go back to him one more time in 6 weeks), we headed up to Greek Peak. Bud wanted to apply for a snow-grooming position up there. He has an interview on 11/13. Wish him luck!

Then, we headed back home. Piper's appt with Dr. Gehring was too close to when Hailey was going to be getting off the bus, so I took Piper to her appt by myself. We were a few minutes late, since I fed her right before we left, and she was daudling a little bit. His regular assistance was there, but she was not the one who took us back for our appt. It was a new girl, one who I had never seen before (and I've been going to this office for 5 years). She was very rushed. She barely made any eye contact the whole time, and just keep plugging away at her laptop. As I was answering questions, Piper spit up (not something she usually does, but I guess the rushed feeding, and driving 60 miles an hour, followed by Twist Run, did not pose well for her belly!). The new girl did not seem too thrilled about our time delay, while I cleaned her up. Dr. Gehring came in, and he was great, as always. Asked lots of questions, including how I was doing. The reason I like him - he truly cares. He asked about Syracuse, and how things were going, and he agreed that is what he would have done if it were his kid (geez, he has 7, so I trust him completely). He asked how Dr. McClure took the news - I said I hoped he was not too bent out of shape for us choosing to go to Syracuse. He said that doctors need to know when it is out of their realm (not his words exactly, but paraphrased). I just wish that doctors would tell you it was out of their realm, and not continue to treat patients when they are not totally familiar with that particular treatment! Piper got her first shot in the Hep B series. She barely cried! Whimpered for literally 5 seconds, and then stopped. She was awake and alert the entire appt, and Dr. Gehring said she looks great! She weighed 11lbs 3oz, but that obviously is skewed with the casts on. The new girl did not measure her, either. He wants to see her again in 1 month.

After the appt, we rushed home. Beth and James were due at out house at 430pm, and I was going to be cutting it close! The kids were excited about trick or treating, and were pretty riled up by the time I got home. Bud made dinner, and we got the kids fed. Then we were able to get them in their costumes.

Since there are only a few houses on our street, we decided to head "into town" to trick or treat down there.

Macie decided to be a bunny again this year. She loves that bunny costume, and had been wearing it around the house all week! We had a hard time getting her to agree to the mask, but she wore it for a couple of houses!

Sam was a lumberjack. Of course, he did not want to wear his hard hat. He also wore it for a few houses, but that was it.

Hailey got to have 2 costumes this year. She had to dress up for school - but, she had to be a character from a book. So, she chose to be Junie B. Jones (her favorite book series). Since it was not a super involved costume, she dressed up as a ladybug for trick or treating.

Piper was a pumpkin - it was the same costume that Macie wore for her first Halloween. Piper did pretty well while we were out, and just about the time we decided to head back to Grammy's house, she started up!

James did not last too long either. He was not super happy about being in his stroller, but it was necessary at one point!

After we finished up, we headed back to Grammy's for a bit - mainly to feed Piper before we headed home.

This year was not as lucrative has years passed. There were crazy amounts of people, and the kids literally had to wait in line at some houses because of the volume of kids down there!! It was unreal! I guess the good thing about it is that I will not be snacking on chocolate for 3 months like I would have been any other year!

Our Anniversary!

Bud and I celebrated our 2nd anniversary on Thursday, the 30th. Despite being together for more than 6yrs, we've only officially been legal for 2 yrs! It was an eventful day, even though Bud was gone for most of it. So, I had the 3 youngest kids for the day. Surprisingly, they were well behaved! We even had to pack up, and head out of the house!

Hailey had OM (Odyssey of the Mind) after school, and she had previously volunteered to bring snack. Well, with all the comotion, I forgot to pick anything up to send with her in the morning. So, I had to take the 3 kids with me, go to the store, and then drop stuff off at school for her. Interstingly too, it was my first time driving since Piper was born!

While we were at the store, Macie and I decided to make a cake for dessert. So, we got all the supplies. We dropped the stuff off at Hailey's school, came home and ate lunch, and got Samuel down for his nap. Piper ate, and went down for a nap as well. Macie and I got the cake put together, and in the oven. Macie was so anxious to get the icing on, so that she could decorate it with the sprinkles! She continually asked if it was time to decorate it, from the moment we walked in the door, until it was actually time (time elapsed=3 hours!!). Just as we were getting ready to ice it (after it cooled) - Bud got home. So, we did not get to totally surprise him, but he was still excited for chocolate cake! Macie did the sprinkles, with a little assistance, and here was the end result (dark chocolate fudge cake with chocolate pudding center, and chocolate fudge icing):

We had a nice meatloaf dinner, with mashed potatoes, gravy, and carrots. Very yummy!