Bullet Point Parent

It has been over a month since my last post. V&L are now 7.5 months old and growing and changing so much every week! This is a really fun age. I am now officially a bullet point parent, as I try to summarize the most recent developments in bullet points below.

  • They are both rolling! And when I say rolling, I mean as in all the way across a room, just for the fun of it. My daytime routine now revolves around picking them up in order to get them out of the jams they’ve rolled themselves into–smashed up against the pack and play, partially underneath a sofa, pressed up against the entertainment center. Layla started first, and Violet followed a week later. They were a little late to achieve this milestone (about 6.5 months), but considering their challenging start to life, I think that’s not too bad!
  • They are eating solids! We started with green beans on March 16, a few days after they turned six months old. At first they were confused and pretty grossed out, but they have really caught on, . At this point we’ve tried rice cereal, oatmeal, green beans, avocado, white potato, sweet potato, bananas, and most recently apples. Layla has been relatively accepting of everything except white potato. Violet has hated everything except the sweet stuff–sweet potato, bananas, and apples. She LOVED apples yesterday, and my hubby couldn’t shovel it into her mouth quickly enough. Looks like she has my sweet tooth! : )
  • They finally conquered tummy time. This was a huge battle at my house. Those first several months of having to be in the pavlik harness and basically living in their car seats left their core muscles very weak. They would scream and get hysterical when we would place them on their tummies. Very traumatizing for two parents who had dealt with the broken bone scream five times in one month. I remember thinking they would never be able to lift their heads up. A therapist began working with them, and we became more committed to enduring tummy time even though we hated their screams. And eventually, they began lifting their heads up. Now they primarily play on the floor on their tummies with their heads held high and proud!
  • They have teeth! Layla cut her bottom right front tooth on April 15, and Violet cut the same tooth on April 17. Violet’s left bottom front tooth came through a few days later. We can see Layla’s left bottom front tooth, but we can’t yet feel it above her gums. Layla has been a little fussy and has a stuffy nose, but you wouldn’t really even know anything was bothering Violet. It is so cute to see their tiny teeth when they grin at us now!
  • Violet is less than a month away now (26 days and counting!) from transitioning to only wearing her clubfeet braces at night! I have been so amazed at how well she has tolerated the braces, but of course it will be nice to reduce the amount of time spent in them. Especially as the weather heats up, she’ll be so much more comfortable not having to wear socks and shoes during the day. Her feet look amazing!
  • We attended OI Clinic at the beginning of April. The babies had x-rays of their spine and hips, bone density scans, and then we met with several specialists: a social worker, nutritionist, physical therapist, occupational therapist, dentist, geneticist, and the orthopedist himself. Dr. E is also in charge of Violet’s clubfoot treatment, so he examined her feet and was very pleased with her progress. The bone density scan showed that their bone density is low (Layla’s is the lowest), but that is to be expected for a brittle bone disease. It is something we will monitor for many years. We found out that Dr. E and the geneticist are planning to write a case study on Violet, which is pretty cool. She is Dr. E’s first OI patient with clubfeet, and with his guidance last fall we made the decision to hold off on clubfoot treatment until she received a few Pamidronate infusions to strengthen her bones. The case study will show that although it is a good idea to start clubfoot treatment as early as possible after the baby’s birth, nothing is lost by postponing treatment in special circumstances. She will be anonymous in the case study, but we still think it’s neat! Layla will be mentioned in some degree also. The doctors promised to send us copies for their baby books!
  • Speaking of Pamidronate infusions, we just had the fourth infusion this past week. This time the nurse was able to access a vein in their hand instead of having to resort to their head. For the past two infusions, Layla has not even flinched when they have stuck her with the needle. She is one tough cookie. Violet cried a little, but not too bad.
  • After the infusion, the nurse drew 7 cc’s of Violet’s blood to be sent off for an official OI diagnosis. They have been clinically diagnosed based on fracturing due to little trauma, but we want the actual piece of paper identifying the type. There are eight types of OI, and our family history strongly represents that we have the mild form, Type I. But we just want to know for sure and figure it may help others in my family who have kids with the condition. None of us have ever been officially typed because even in my generation, this wasn’t really done much. Only three labs in the U.S. do this kind of testing, and Violet’s DNA will have to be mapped out in order for the gene mutation to be identified. It may be six months before we have a result, but it could be less. Some parents face child abuse allegations or even have their children take away by the system due to OI, so it’s a good idea for us to protect ourselves. We already had the babies’ first orthopedist write a letter that we could present at an emergency room explaining the diagnosis, but actual test results would be a lot better evidence.
  • And speaking of broken bones, if we make it through the next eight days, May 6th will mark six months without fractures! I’m majorly knocking on wood as I type this! Last October, we would never have thought this would be possible. They were breaking so often and despite our best efforts to be as careful as possible, basically handling them like glass and not letting anyone else breathe on them. Pamidronate has truly been a miracle drug for us, and hopefully it will continue working its magic!
  • One toy we wondered if they would ever get to enjoy: their Jumperoo. They love it, and so far they have tolerated the bouncing very well. We get nervous about these types of things, but have decided to treat them as normally as possible until we have a reason not to. So that is another new pastime at our house, to go along with the rolling.
  • Layla is babbling! She woke up six days ago saying sounds like “Dadada” and “Bababa.” Violet is not quite there yet, but I’m sure she’s not far away from achieving this milestone.
  • Nothing makes me happier than when they see me first thing in the morning. They sleep on their bellies now by choice, and they bang their little fists on their mattress because they are SO happy to see me. That daily greeting alone makes the process of cycling at CCRM a million percent worth the time and effort. It’s the best way to start out my day!
  • Speaking of waking up in the morning, they are great sleepers! We are finally on a really predictable schedule. Because they don’t go to daycare, they sleep until about 8:30, then nap from about noon-3. They eat five bottles a day and eat their solids right after they wake up from their nap. They go to bed at about 8:30 p.m. I cannot complain about this schedule at all!
  • I haven’t done a great job of prioritizing myself, unfortunately. As long as things continue to go so well with their health, I’m going to look for a job again in August. I want to enjoy the summer with them and then go back to work. I have been extremely lucky to have this time with them, but I think I have discovered that I need a job as part of who I am. I’m doing an important job, obviously, but I think I will value my time at home more when I have a career again. Nothing is stopping me from prioritizing myself, except I seem to lack the ability to flip the switch. Tomorrow marks one year since my first knee dislocation, the one that happened at work. From April 29 until the end of the year, I wasn’t in good enough condition to get out often. So I am committing to spending at least 45 minutes outside each day starting tomorrow through the end of the summer to make up for not being able to last year.
  • We decided to keep our three frozen embryos for another year, so we paid the $300 a few weeks ago to keep them stored. We won’t have any more kids, but we just didn’t feel quite right yet about discarding them. I checked with Danielle, the genetics counselor at CCRM, and she let me know that CCRM won’t allow embryo adoption to another couple who have a history of a genetic condition, even if the adopting couple consents. So our options were to discard or store.

Violet is demanding a bottle, so I must close this out. My next post will contain pictures!

3 responses

  1. I somehow didn’t manage to follow you over to your new blog until just now, so I’m glad to get all these updates. I’m glad that everyone is doing well, despite some little glitches along the way. Your girls are adorable and it sounds like they are real little troopers!

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