Sonya's First Pamidronate Infusion!

Hi everyone! Sonya had her first pamidronate infusion cycle Monday, Tuesday and Wednesday of this week! She did very well and had no terrible side effects or allergic reactions. The nurse was able to get her IV placed on the first stick, which was great since this process usually takes 3,4 or 5 sticks because of her very small and mostly invisible veins! They took 2 vials of blood for tests and then gave her a flush before starting her treatment. Sonya was really upset about getting hooked up with the IV and monitoring systems, mostly because she was being restrained, but she held her arm very still and let the nurses do their job. My heart was breaking as she asked "why?, why? why?" and then screamed "No, No, NOOOOO!!!" whenever the nurses would attach her medicine tube. Fortunately they were able to leave the IV tube in, tape it down, put a sock over it and send us home with it still in place after her treatment each day! This way she didn't have to be re-stuck with the needle each time. Yay!

My Aunt Kathy came along with us for the first day and she was my extra pair of hands, ears and eyes and she thought about some extra questions that never crossed my mind! How lucky am I to have her for an Aunt! It was nice to have her there to help calm Sonya down and to give me the chance to go for bathroom breaks! She also went out to the cafeteria to grab us some food! Thank you Aunt Kathy!!! I failed to think about bringing food for us to eat, I only thought about Sonya's dietary needs! I did remember to bring things with me on the other two days as I was not allowed to leave the Day Medicine unit.

The first 2 days were the hardest and Sonya was very clingy. She refused to be laid down and sat in my lap the whole time we were there. The first day the battery pack for the IV drip was not charged so we had to stay in our room all plugged in, but the second and third day we had a full battery and took advantage of short walks (it took about 45 seconds to make 1 lap) around the little day medicine unit. She loved the walks in her wagon and it broke up some of the monotony of the long hours spent in this part of the hospital with no windows. On the second day they attached a urine collection bag with adhesive and she made just enough into the bag for analysis! I brought a portable DVD player with Spongebob DVD's, puzzles, her magnetic fishing rod game, a build your own monster puppet with velcro parts, books, coloring books and crayons, Color Wonder paper and Color Wonder markers (she loved this new exciting adventure), her teddy bear and blanket for comfort, her baby doll and a Snap Dolls puppy dog (a big girl toy which really caught her off guard, I could see her thinking "Are you sure I can play with this? But you always tell me no no"), some small Fisher Price plastic flower bug cars, a kazoo, harmonica and wooden train whistle (the nurses were impressed with Sonya's talented playing skills), a large plastic slinky for Sonya to completely mangle up and for me to untangle so that her sister Akela wouldn't freak out about her borrowing it and one of those light up spinning lights in a plastic globe on a wand things. All of that combined with a lunch box full of treats and a sippy cup with extra juice, as well as a large diaper bag full of all the typical baby care items, my purse and a small bag of things for myself (book, magazines and sudoku puzzles, you know just in case she actually slept which she never did) made us look like we were staying for a whole week in the hospital each day that we arrived! However, I used everything that we brought to keep her from chewing on the IV tube with the exception of the small Fisher Price cars that Sonya felt the need to throw with reckless abandon at all the evil equipment in the room! Those got put away right quick! Hahaha!

We met some older girls who have OI also while we were there! Both Mary Kate and Sarah were so sweet and friendly! It was very nice meeting the teen girls and to see how well they can get around in their wheelchairs very quickly as well as talking with them about some of the tough teen stuff when it comes to limitations. They give me very much hope for Sonya and her future! We look forward to seeing them again in Day Medicine at duPont sometime! Since the older girls get their Pamidronate less often we may not see each other when we return in 8 weeks but our appointments may collide another time!

By the third day Sonya was more relaxed after they accessed her IV and started her medicine. She laid on her bed and was completely content watching Spongebob for over 2 1/2 hours! I took the opportunity to read my book and review her discharge instructions! That's when it happened. I didn't hear or smell anything. I just simply got up to check her diaper, it was about time for a change as she needs to be changed every 2 hours with her spica cast on. Well there was a nice big brown puddle underneath Sonya all over the white hospital sheet. Oh man! I immediately started to clean her up with baby wipes. It was all up inside her cast, on the bottom half of her shirt, just everywhere! I called over the nurse to ask for clean bed linens and for her to send a casting technician up because I was certain that this was sudden death for the spica cast and that they would have to remove it and re-cast her! Yep, it was that bad! I went through a whole entire bin of baby wipes plus a package of wipes that the hospital had and then the casting tech arrived just as Sonya's IV machine started beeping indicating that she was finished. The casting tech cleaned even more of the mess out with a huge roll of stockinette, rubbing alcohol and water as the nurse started the flush on Sonya's IV all the while Sonya screamed like a wild banshee! My poor baby! The casting tech was very sweet and gave me a huge roll of stockinette just in case we had a repeat episode at home. While holding a small portable fan (I packed that too) over Sonya's bum to get her dry from this terrible diaper explosion the nurse explained to me that diarrhea can be one of the not so pleasant side effects of Pamidronate. Once Sonya was all packaged up in a fresh clean diaper and a clean onesie another nurse came over to tell us that the blood that was drawn on the first day never made it to the lab! What?! So, unfortunately after all of that craziness Sonya was not quite done yet. Trying to drawl blood from Sonya is like trying to wring out a dry cloth! They got very little after about 25 minutes of trying like heck to suck it out of her! I gasped and pointed out that her wrist and lower arm was turning blue and practically screamed "WHY IS THAT HAPPENING??? IS THAT NORMAL???" They nurse removed the tourniquet and told me she had it on a little too long. What??? It was just horrible! As soon as they gave up, removed the IV and placed a Band Aid over the spot Sonya calmed down and held on to me tightly for dear life! Somehow she has absolutely no bruising from the event and has been very happy today at home! I hope these 8 weeks are super long and relaxing before we go for round 2!

From what I have heard from other parents of OI children the great side effects of a happier child with less bone pain and decrease in fracture rate can be seen as soon as after the first treatment cycle of Pamidronate! I'm so excited to see Sonya doing better! I hope it does resonate within her like they say! Another very cool thing is that Dr. Bober stopped in several times throughout Sonya's treatments each day to see how she was doing and if I had any questions or concerns. He will be doing this every time that we go for treatment! So we won't need to make follow up appointments with him anymore as we will be seeing him every 2 months during treatment! I asked about Sonya's recent chest deformity on Wednesday. Her lower ribs have started to flair outwards and her upper center of her chest is starting to protrude. These chest deformities as well as some others are common with OI and unfortunately there is nothing that can be done about it. Dr. Bober feels that they are mild for now and that hopefully the Pamidronate will help slow down the process a bit, but it is something that Sonya will have to learn to accept as she gets older. This could be very difficult for her as she becomes a pre-teen and everything that is different about her becomes hard for other average kids to understand and accept. I'm hoping that she doesn't have a terrible time with acceptance and I have already begun reading those chapters in preparation.

All in all it was a great 3 days minus the poopy diaper, the blood mix up and the screaming! I'm so glad that it is all over for now and that we can resume everyday life! Ian and I are starting to house hunt and prepare for selling our current home, so as always we are staying quite busy! More on that later! Thanks for checking in and I will leave you all with the very few snapshots from the first day that I took at the hospital. Sonya was kind of angry with me for documenting this not so fun part of her life!

So far so good!


"What is that machine doing?"



"Ok, can you stop with the pictures already mommy?"


"I said stop already! Your not listening to me so I'm going to turn my head away now!"



"See my boo boo?"