Another surgery...

Life kept me from updating for another year, but now I'm waiting to have surgery and thought it might be a nice opportunity to revive Curly Bones. I've been struggling with pain and discomfort in my right ankle for several years now and I finally found a surgeon willing to help. In August I will be having a "Hindfoot Triple Arthrodesis" that will help align my right leg with my foot, fuse multiple joints and if all goes well, keep me pain free! Anxiety has kicked in, but I know it needs to be done. I'm hoping to spend this Summer running around with my kids and having as much fun as possible because recovery is a minimum 6-8 weeks non-weight bearing and life will quickly come to a standstill. We plan on renting a recliner that I can sleep in, have several pieces of medical equipment from previous surgeries and I'll have plenty of entertainment from books to revisiting old TV shows. I even bought a loom in the hopes that I'll enjoy learning how to loom knit. I loved posting about our experience with IVF and had some great responses from other families who struggled with fertility, now maybe I can be a bit of a support for others going through tough times with autoimmune. I'll do my best to update about my experience as much as possible and hopefully it'll be therapeutic along the way.

Hoping this works!

 So I decided it was time to give Curly Bones more of my time and attention but in the meantime, I've changed my email, had surgery and am now trying to recover. Recover from surgery and a change in email address. I lost Curly Bones for a bit in the middle of the change and I'm hoping things are back to normal again! Let's see if this works!

Almost four years

 So much has changed since my last entry, especially in the last three years. We've spent the last 10 months staying as close to home as possible to avoid COVID and the two years prior to that we were caring for and grieving the loss of multiple family members including my Grandma, my Dad and my Aunt. I often thought about Curly Bones and whether or not I should just let it go all together but I can't bring myself to do it and would love to find a new direction for it. It all started as a form of venting about and celebrating our journey through IVF but that time in our lives has passed and raising two kids took over any free time I had. I've considered writing about raising kids with my JRA, tools I use a daily basis or even just a public journal about living with JRA. Because of COVID, my husband is now working from home, the kids are doing Distance Learning and my alone time is almost completely nonexistent but I find myself needing a project. So maybe Curly Bones can help fill that void. I'm still not sure where I want to go with it but I'm hoping I'll slowly figure it out.

I'm horrible at this...

Man I'm horrible about keeping up with this blog! So much has happened and not much of it is related to Curly Bones, so sadly it's taken a backseat again. I was sitting on my computer paying bills and saw the logo on my bar, so I thought I'd check in...maybe I should look up more often and say hi!

We had family visit from out of the country on two separate occasions so we've spent a lot of time at Disneyland, the zoo and which every mall we happen to be passing by. The last couple of months have been a blur because of it but we had a great time. My oldest is finishing his first year of Preschool next week and then both of the kids will start attending school together in the Fall. Summer break will be welcomed in our house but I'm sure the time will pass quickly and it'll be school time again before we know it.

My health in general as been better but a bit of an experiment for almost three months. I've been testing for ovulation every month because of hormone issues I was having and so far we've figured out that I'm in fact NOT going in to early menopause. Good news for a 39 year old and so far stopping birth control has fixed some issues I was having. I've taken birth control for years to help regulate my hormones but it seems it was causing more problems than benefits since having my kids. So for now I'm off birth control and my husband and I are debating whether or not we take advantage and try naturally for baby #3. Whether we try or not tends to be determined by how our kids behave that day. We had a great day, let's try...they we're out of control today, 2 kids is enough and we're done. hee hee

I've also worked hard to change my diet and I do my best to stay true to Ketogenics. It's not always easy but because of it I've been able to stop taking NSAID's completely and am able to get by on a weekly dose of Enbrel and the occasional dose of Tylenol. When I stay true to it, I feel more energetic, stronger and I can get out of bed in the morning without having to stretch and move around for an hour, something that's hugely beneficial with two toddlers to take care of. Because of Ketogenics I'm also able to take care of my kids on my own without help while my husband works. It's been a great feeling of accomplishment and even though I appreciated the help from family, it's been a relief to everyone to see that I can do it on my own. I don't always get enough done or at least everything I'd like to do but I'm working my way up to it. I've encouraged a few friends to start Ketogenics as well and they've seen huge improvements in their inflamamtion and one friend has even made huge strides with her MS. It might not be for everyone but If you're struggling inflammation and autoimmune diseases, I highly recommend it and have a few resources I'd be happy to share with you. I'm done sounding like an infomercial now. I hope everyone is doing well and enjoying life.

Ideas...

Go figure, I'm slacking and haven't been keeping up with my entries. Ugh. Finding out baby number three wasn't much of an option hit harder than I expected and Curly Bones took a major backseat. I didn't want to write about all of it and now that I am ready to write again, I feel like I'm at a loss for words. I really don't know what to say or if I should bother writing at all. I started Curly Bones as an outlet for our infertility woes, a place to vent, a place where others could visit and realize they weren't alone. It helped me through a lot and I hope it helped at least one person but it served it's purpose either way and now I'm not sure what to do with it.

I've considered taking things in a completely new direction, I still have Arthritis and a major part of Curly Bones revolves around my Arthritis. I'm done trying to get pregnant, done having babies but I'm still a Mom with Arthritis, raising two toddlers and realized maybe I can still help other mothers. Mom's search out parenting advice all the time and mom's with Arthritis aren't any different but we definitely have a different experience when it comes to nurturing our children and maybe sharing my experiences as a mom can help.

I've come to realize there are a lot of mom's out there with Arthritis and other Autoimmune Diseases that don't have anyone that can relate to what they go through on a daily basis. There aren't a lot of resources for advice on the physical aspects of caring for a baby when you have Arthritis or recommendations for tools that can make life as a Mom easier and less stressful. Maybe the few years of experience I have can help those new moms that are searching for any advice they can get. So, for now Curly Bones will stay active and I'll still be here for those of you who have infertility questions or just need someone to talk to. I'll also try my best to decide what's next for this page of mine and I'll do my best to make it happen before another four months passes.

I'm back!

My husband surprised me and bought me a new Chromebook so I can get back to writing again! Now my son can officially take over my iPad, my daughter can nap and I can blog in peace. Well try to anyways. heehee

So much has happened since April that I'm not sure where to start. At the end of July we met with our fertility specialist in hopes of having another FET. We had 5 embryos left and always wanted 3 kids, so the time was right. After discussing my past pregnancies and miscarriages, our doctor suggested we have our final 5 embryos tested and see how healthy they were and if they possibly had any unexpected issues. We weren't excited about the additional cost but agreed it was the safest thing to do and would save me from the possibility of another miscarriage. Our doctor was pretty confident that we'd have at least one healthy embryo but sadly after weeks of waiting and testing, we found out all 5 had chromosomal issues. Our hopes of having another child flew out the window and we felt lost. We always planned on having 3 kids. My husband even had 3 boy and 3 girl names picked out, never expecting that it wouldn't be possible.

We started the entire IVF process with the fear that we might not even be able to have one child but our hopes were lifted when we found out we had 13 embryos. One child seemed possible again, why not 3! I even joked with my husband that 3 was the limit, I wasn't having an entire football team! Now, suddenly, we're done. No football team. No reason to save the countless boxes of baby clothes and gear that have taken over our garage. Nothing. We're suddenly done. But not by choice. We ran through our options, risk trying to conceive naturally at the age of 38 and 42 years old, risk creating more embryos with serious chromosomal issues, risk more miscarriages or just stop and remember how blessed we are to have two very healthy and happy kids who we love beyond belief.

I felt like such an ungrateful ass for being so upset that a third child wasn't possible, we're lucky to have two considering everything we've gone through but like my friend reminded me, wanting more children to love is never a bad thing or something to feel bad about. Loving and caring for your kids is the most rewarding thing in the world and we wanted to share it with another child, how could that be a bad thing. I kept reminding myself that we're lucky to have two kids and a boy and girl at that but even two months later, the want for another baby is still there. My husband wanted to immediately clear out the garage, sell the baby gear and old clothes, try to move on and move on as quickly as possible but I'm still not mentally ready to do it.

It shocks me how hard it's been to let go of it all. My husband hasn't let it go either. He's researched adoption and even the risks of having more children naturally. And then it hit me...we have an option, a fairly safe option...adopt an embryo! We considered the idea of adopting out any healthy embryos we had left, why couldn't we now adopt one ourselves? It's basically an option for people like me who can safely carry a pregnancy full term but can't create a healthy embryo of their own. Similar to traditional adoption but you can experience pregnancy and childbirth and you have control over your pregnancy and health care, unlike traditional adoption. The idea opened up an option but also left us with more questions. So we're asking questions and considering the option.

Birthdays, D&C and still recovering...

Happy Birthday Ladybug!

My baby girl turned 2...I can't believe it! She's smart, stubborn, confident and best of all, the comedian of our little family! There are days that she makes me want to pull my hair out and the next, she's all smiles and wants nothing more than to make us all smile and laugh. Luckily, she keeps us smiling more than anything and no matter what, at the end of the day, she's perfect and I wouldn't change anything about her. A month later I turned 38, I can't believe that either! It's been a rough 6 months but my birthday made most of it fade away. I had an amazing few days with family and friends, eating, laughing and even enjoyed a day at Disneyland with my family, it was perfect. Then a few days later, reality set in again.

My HCG never made it to zero. It finally made it to 8 and then BAM, back up to 32! My Gyno was shocked and at a loss for words. We were so close! I was still not feeling well, still having irregular bleeding and feeling like this was never going to end. It was time for a D&C. Things had taken their course long enough, it was time to end it once and for all. It wasn't ideal but I'd had enough.

My Gyno decided it was best if I had a Hysteroscopy to get a better look at my uterus but agreed that it would be followed up by a D&C even if we didn't find anything. I didn't want to go through any of it and I couldn't believe I was going down this path after all these months but feeling so miserable was even worse.

When the time arrived, my husband drove me to the hospital. I was given some anxiety medication, signed consent forms and then waited for the anxiety medication to kick in, which thankfully didn't take long. A doctor I'd never met was taking care of me and she seemed very thorough and calm, something that was very reassuring. Unfortunately, everything after our short talk seemed to take forever and the pain kept coming. Vaginal shots, cervix dilation and what felt like countless scopes and tubes being prodded and no amount of talking or words of encouragement helped. I've heard how horrifically painful D&C's can be and frankly, it was the easiest part! My husband was sitting next to me the entire time, comforting me and at times his expressions gave me a sort of heads up for the pain I was about to experience.

We watched everything on a small TV. Found the opening to the fallopian tube on my right side, the scar where the opening for my left tube used to be and then nothing but a very healthy uterus. Nothing to indicate why my HCG wasn't going down, nothing to explain why I was still feeling so miserable...nothing. Everything looked healthy and perfect. Usually that would feel reassuring but this time I felt exhausted...there weren't any obvious answers. I needed answers and quick solutions. We proceeded with the D&C anyways, at my Gynos request, followed by more prodding, more severe pain and a cup filled half full with blood that we hoped would solve everything. The doctor left me with some comforting words and sent me home to rest.

A few days later I received an email letting me know I was completely healthy...no cancer, no precancerous tissue or even leftover pregnancy tissue was detected. We followed up with another HCG test the next day and finally...zero! It's only been 11 days and I guess I'm slowly feeling better. Even with the results, my Gyno is convinced that there was simply a tiny piece of pregnancy tissue leftover from one of my recent miscarriages. Even the most microscopic piece can linger and cause problems. Through all of this, we still have to wait. Wait for my periods to normalize again, hope all of this worked and then in 3 months, if I'm crazy enough, we can try again. For now, I'm taking things day to day, enjoying my family and doing what I can to feel "normal" again...the rest will have to wait.

Another miscarriage...

After a month of bleeding from my miscarriage in November, December passed by quickly with a celebration for my friend's wedding in New York and then back to California for Christmas. No complications or serious bleeding. Then January 8th rolled around and things started to change. I started bleeding again, more than 2 weeks before my expected menstrual cycle. More headaches, drowsiness, bloating. At first I thought it was just the "irregular bleeding" my OB had warned me might happen over the next few months and when it slowed down, then stopped a week later, I let it go. Then 3 days later the bleeding started again. After another week and a half of bleeding and severe headaches, I called my OB, I'd had enough. His nurse said the irregular bleeding could last up to 6 months but when I'd told her I'd been going through this for several months before my miscarriage, she agreed that I needed to see the doctor and possibly have a biopsy to make sure there wasn't something seriously wrong.

On January 29th, my husband left work early and drove me to the OB. You have to take a pregnancy test before any biopsy, standard procedure but what threw us for a loop was that it came back positive! We were speechless, even my OB was shocked! I'd only been back on birth control for 2 months, so we all agreed it wasn't 100% but I'd always used it to control my hormones, I never actually needed it to prevent a pregnancy!

Instead of a biopsy, we were now being prepped for an ultrasound. You hear stories of people getting pregnant "naturally" after going through years of IVF but I was on birth control, I only have one fallopian tube to get an egg to my uterus and sex wasn't exactly at the top of our "to do" list after a miscarriage, traveling and the holidays...it didn't seem possible. And then we saw it, a sack! "Oh shit!" was literally the only thing I could say. It was overwhelming! Joy, fear and shock were running through my body, followed by a million questions. Was I seriously pregnant or was this leftover tissue, was this pregnancy going to be healthy...I'm almost 38, holy cow did my eggs finally soften enough to really be pregnant...what next?!?

"This is either a VERY early pregnancy or you were pregnant but it's abnormal and you're going to miscarry again. Let's run an HCG and progesterone test and we'll go from there," was my OB's response. We went straight downstairs, drew some blood and told our parents what had happened. No one knew how to react...mostly we didn't want to get too excited. Blood work came back the next day confirming that I was pregnant but chances that it was a healthy pregnancy were low because my progesterone count was almost nonexistent. We ran the test again 3 days later and it was clear this wasn't a healthy pregnancy. My counts had only risen to 197 when they should have been well over 300, not a good sign.

The next day I was back at the hospital, this time for another ultrasound to find out what was really happening. They only confirmed that there was something in my uterus but it was time to find out if it was leftover tissue from the previous pregnancy or if it was in fact a second abnormal pregnancy. Finally, on February 3rd my husband and I were back in my OB's office for a biopsy but for completely different reasons. I never expected a biopsy to be easy but I never knew how uncomfortable it could really be and I'm glad it didn't last any longer than it did! The only good news was that the irregular bleeding should stop soon enough and we'd essentially be giving my uterus a bit of a fresh start. The next day my OB's diagnosis was confirmed...it was an unexpected abnormal pregnancy and all of the bleeding was the beginning of another miscarriage.

Now, 10 days later, I'm still lightly spotting, headaches come and go but it's the pure physical and mental exhaustion of a miscarriage that is knocking me on my butt. I still have to have my HGC count checked every week until it hits zero...last Monday was at 99, so I'm hoping zero isn't too far off. I'm trying to rest and move on but I can't help but think of the next step. Clearly we CAN get pregnant naturally now but should we? I'm almost 38 and my husband just turned 42...what are the possible complications that come along with our age? Do I even produce enough hormones to sustain a natural pregnancy? Do we try to get pregnant naturally and possibly face another miscarriage or wait until May like we'd planned and try another embryo transfer that's closely monitored? Maybe this was all a one time thing, maybe we'll never get pregnant on our own again but at least we know there's even the possibility of "maybe." We have options that we've never had before and it feels confusing and a little overwhelming but exciting at the same time. For now I need to rest, let my body heal and when the time comes we'll decide what feels right for us.

No replacement, miscarriage and a 3 Year Old...

It's been so long since I've written anything on this page, I even forgot my password!!! Luckily I figured it out, so it's time for an update!

Going all the way back to April, my doctors decided that even with all of my shoulder pain, a replacement would be a bad idea. Unfortunately, shoulder replacements don't last as long as other joint replacements and when one wears out, another has to take its place. Every time you replace a joint, you have to cut away at some of the existing bone and the more often you have to replace a joint, the more the bone is cut away and ideally I'm going to live long enough that I'd take the chance of cutting away too much bone until nothing is left to work with. You also take the chance of losing a little mobility every time you have surgery, something I'm already having trouble with. So it was recommended that I take it easy, don't lift too much and keep my shoulder as loose as possible. Keeping my mobility has been tough but taking a break from lifting did help with some of the pain. For now I'm trying to keep as much mobility as possible and eventually I'll be working with a physical therapist to retrain my muscles and ideally gain even more mobility. Easier said than done but I'll get there.

Even with all of my shoulder issues, my husband and I decided to try for baby #3 this past September. The transfer was successful but sadly I had a miscarriage in early November. Nothing traumatic happened, the baby simply stopped growing. I knew something was wrong pretty early on but we kept holding out hope. My HCG counts weren't increasing as quickly as they should have and by our second ultrasound we realized the embryo stopped developing. It hit harder than I expected but we're doing better now. It was a long process but fortunately I didn't have to have surgery this time. I had to take Misoprostol, a medication that assists by helping the tissue pass more quickly. I had to take it twice because some of the tissue didn't pass the first time but eventually it did it's job and I didn't have to have surgery or stay in the hospital, I was able to let everything pass at home. I was fortunate enough to go through all of it without much cramping and pain but it all took it's toll and drained me of any energy I had. My family was extremely supportive through all of it and helped out even more than usual. We can try another transfer at the end of this month if we want but I think I need more time to recover, work on my mobility and strength and just feel healthy again.

I decided to give Enbrel another try. I've been on Prednisone for about 5 months now and I've had enough of the puffy face, short temper and countless side effects that come along with it. There's always a love, hate relationship when I take Prednisone but unless I'm pregnant, the benefits aren't worth it, so back to Enbrel I go. I've only taken the Enbrel for 2 weeks and I've noticed a little improvement bu I know it will take some time for it to really kick in. I'm still weening off of the Prednisone and it's going to take longer than I'd hoped. My doctor wants me to take a full 4 months to ween off of it...not going to happen but I'll take it slow so I don't completely crash and burn. I'll probably ween off of it in time for another embryo transfer and have to start the Prednisone again but even a tiny break from it is appreciated.

On a more positive note, my little man turned 3, I can't believe it!!! We had a great day celebrating with family, friends, Thomas the Train, Lightning McQueen and Minions. He could decide on one theme, so we combined his three favorites. He's trying so hard to gain his own independence but still wants to be the baby as well. He has a hard time balancing it all some days and tests our patience along the way but we're all learning together and trying to keep our sanity as much as possible. He's still the sweetest little guy I know and even the craziest days are worth it...especially when he lets me rock him to sleep. The last few months as a parent have been completely exhausting emotionally and physically but I wouldn't change a thing...we're beyond blessed!

1 year old and a shoulder replacement...

Our little family

I can't believe my baby girl is already and year old! She's walking, slowly but steadily and babbles 24/7! She still adores Jimmy and loves playing with him but also loves her alone time with her books. She's a crazy little girl and she keeps us busy but she makes us smile and laugh through all of it. I'm so incredibly proud to be her Mama!

Jimmy's doing well, he'll be two and a half this month which is mind-boggling to me! He's an amazing little guy and still such a love-bug. Everyone warns you about the Terrible Twos but so far, he's minor. He fusses about eating but only about having to eat. He'll eat anything you give him, even his favorite, broccoli but he'll take forever to do it or sometimes whine that its on the wrong plate or that you gave him a spoon instead of a fork. Random weird stuff...just because he's 2. He still has trouble sharing some days but Time Out has been a lifesaver and he still wants to be treated like a baby from time to time but he's starting to realize that babies don't have as much fun as big boys.

And then there's me. Ugh. I've been taking Enbrel for almost a year I think and I've had enough of it. It makes me feel better...less stiffness and pain but I hardly ever take it! I started having problems, too many infections and colds, so my Rheumy recommended doing my injections every 2 weeks instead of every week. Started out well and then the kids came down with Croup. I ended up with some form of it and I had to stop taking my Enbrel again. When I finally felt better, I did my injection and a week later I came down with a sinus infection, so I stopped my Enbrel again. Now I've been 2 weeks without an injection, still have a sinus infection and just started my second round of antibiotics which means no Enbrel for at least another 2 weeks. And this is the cycle I've been on since I started taking Enbrel last year. So as grateful as I am that my counts have come down, It's just not worth it if I'm sick more than I'm well. I meet with my Rheumy next month, so I'm thinking we'll just continue with my NSAID's and steer clear of anything else for a bit.

I started having a lot of shoulder pain last month, this time in my right shoulder and just found out yesterday that I tore a muscle(s) in my shoulder and that a total replacement is in my near future. Not the diagnosis I was hoping for, especially with two little ones to look after but that's the joys of having joints like a 90 year old. The specialist I met with wants to consult with a couple of other surgeons before we make any plans but he's pretty confident that they'll agree with him. I'm pretty confident they will too. I have to take it easy, stop lifting heavy objects (mostly my kids) and let my muscle(s) mend as much as possible and then in a few weeks we'll try a cortisone shot. My doctor is hoping that my Enbrel will wear out by then and my chance of infection with the shot will be a little lower. If all goes well, he's figuring we'll wait for the muscle(s) to mend, try physical therapy to get as much range of motion as possible and then surgery. I lost a lot of mobility when I had my left shoulder replaced, so I think they want to keep my right moving as much as possible before they do anything. I'm praying for the same. Anxiety set in with the idea of having another replacement but what can you do. It has to be done and the sooner the better.

So tired...

Things have been so busy lately that I feel like I'm falling behind on everything, especially updating things here. My little guy turned two last month! I can't believe he's already two! There are days that drag on and I wonder if I'll ever get through them and then in a blink of an eye, days and weeks have passed. I remember being so nervous the first night we were home alone with Jimmy and now he's running around like a little man, talking, trying to make his little sister laugh, he's everything I could have hoped for and he reminds me everyday how blessed we are to have him.

Little Ruby is doing well too. She's been doing an army crawl since she was 6 months old and now two months later she's taking a few strides on all fours and can sit up on her own but doesn't do it very often because she's too busy trying to keep up with her big brother. I can't wait for her to start walking but I know she's going to follow Jimmy everywhere. Fun when he wants to play with her but I know he'll have a hard time with it too. He loves her but is quick to let everyone know when he's had his fill of her and needs his space. Ahh, the joys of siblings. hee hee

Ruby's increasingly harder for me to keep up with but she doesn't wander as much as Jimmy did because she wants to be wherever Jimmy is, so that helps. It's also been great having family with us during the day to help out because things would be very different without them. I always knew the first couple of years with a baby would be tough physically because of my JRA but it will pass and it will be worth it. Do I want a third child like we'd always planned? That's still something I need more time to decide.

I'm finally getting used to my finger being fused and there's no pain but it does get in the way from time to time still. Nothing unexpected though and I don't regret having the surgery. My Arthritis has been doing pretty good with random days of discomfort but mostly days that I saw coming. We took Jimmy to A Day Out with Thomas for his birthday and even though I felt great the whole day, I paid for it that night and the next day. After a day of walking and standing, my right ankle just throbs with pain. It's sharp stabbing pain along with what feels like severe cramping and no matter what I do, I just can seem to escape it. The pain lessens over a day or two but it's enough to keep me off my feet until it goes away completely. I'm still taking Enbrel and Nabumetone and they seem to be enough to get me through a typical day but it might be time to take a closer look at my ankle and try to figure out why it can't keep up with my other joints.

Aside from the everyday pain that comes with JRA, I've been exceptionally tired. I'm sleeping well at night and fall asleep almost as soon as my head hits my pillow but it seems like no matter how much sleep I get, it's just not enough. I visited my doctor thinking maybe my iron was low or I had something going on that I wasn't catching but everything came back normal and my doctor just put it off as lack of sleep. Luckily my husband has been very understanding and after we put Ruby to bed, I go to bed too and my husband stays up a bit longer with Jimmy and then puts him to bed. I've been going straight to sleep without trouble, sleep solid through the night and nine hours later, still wake up tired. I feel like something is off, something is going on that we're not catching but I have no clue what it is. So for now I'm resting when I can, sleeping when I can and hopefully things will get better. Maybe it's is lack of rest, maybe it's too much rest and not enough exercise, I don't know. It's just one of the joys of JRA I suppose.

Enbrel, surgery and sleepless nights...

I can't believe how long it's been since my last post and how much things have changed since then! Not sure where to start actually.

I'm still on Enbrel and I'm doing very well on it! I'm taking 50 mg, once a week and it's made a noticeable difference in my pain levels and at my check-up last week my ESR count was only 9! The lowest it's ever been was 20 and that's when I was pregnant and feeling great. It hasn't fixed everything, I still have stiffness and pain but it's definitely an improvement. And I haven't had any problems with infections either which is great. Needless to say, I'm staying on the Enbrel!

Soon after my last entry I found out I had to have surgery to fuse the middle joint on my left index finger. I've suffered with a Swan Neck Deformity in the joint for a long time and it was painful on a daily basis. After meeting with an Orthopedic Surgeon, we agreed that the best remedy was to fuse the joint. I haven't had full range of motion in the joint for years, so fusing it didn't seem like that big of a deal...I was kind of wrong. My surgery and recovery went very well but I never realized how much the hyper extension actually helped me. My thumb is pretty bent up, so the hyper extension of the index finger actually allowed for some extra room to grasp larger objects. Now that the finger is permanently bent at 30 degrees, I've found it hard to grasp certain objects, like my daughter's bottles. Taking the splint off helped but I'm having to wear another splint at night that now helps the rest of my finger stretch and loosen up so that I can grab larger objects without my finger getting in the way. Things are getting easier but it's going to take time to get used it.

Right after my surgery, my son decided to start getting out of bed in the middle of the night, stopped taking naps, changed his eating habits and did everything possible to get our attention. I think he was feeling left out since everyone was having to help more than ever with my daughter and didn't care what kind of attention he got, as long as he got some. Luckily he's getting back to taking naps and sleeps through the night again but getting him to go to bed at night is still a bit of a struggle. Now he's experiencing Separation Anxiety, so we've given in to staying in his room until he falls to sleep and if he skips a nap from time to time, it's no big deal. We feel like he's still too young to fully understand what's going on and eventually when he does, then we'll explain to him that he needs to stay in bed and go to sleep even when we leave the room.

My daughter has been great through my surgery and all of her brothers sleeping problems. The girl can sleep through anything and has to be one of the happiest and most relaxed babies ever. She sleeps great, has cut two teeth without much complaint and is even trying to crawl and just barely turned 6 months old. She's had a few doctors appointments since my last entry and her heart murmur is gone! Whew!

Life with JRA and two kids is exhausting but full of surprises every day. They're my little miracles and I'm so thankful that I get to be their Mama.

Secondary Drowning...

I'd never heard of Secondary Drowning before and I'm sure there are plenty of other parents out there who haven't either. With summer coming up and knowing how much kids love playing in the water on those hot days, I thought it was important to share this post written by a mom who's experienced it first hand. Keep those little ones safe and remember to always listen to your Mommy instincts. Thank you Delighted Momma for sharing your experience.

Secondary Drowning + My Recent Experience & Real Life Almost Nightmare

Enbrel, Heart Murmur and a Big Boy Bed...

Jimmy having a blast at the park & Ruby's first smile.

I've been taking Enbrel for a month and I can't really tell if it's helping or not. For now I'm taking 50mg every Wednesday with the hopes that I won't need a higher dose for a while. I wake up every Thursday feeling good but look forward to taking my next dose within a few days. I'm still sore and stiff most days, but I think it's because of the changing weather and the fact that I'm taking advantage of the good days. It doesn't help much that Ruby wants to be held 24/7 either. I hurt from my fingertips up to my shoulders, but it doesn't seem so bad when my baby girl just wants to cuddle and fall asleep in my arms. I have days where I feel more flexible and think "ooh, I should do this or that," and then I pay for it the next day and remind myself that I need to take it easy still and let the Enbrel kick in for a bit before I overdo it.  I have another check-up next week so I'm assuming we'll run some more blood work and decide if we're going to keep things the same or change it up a little.

Ruby gave us a bit of a scare at her two month check-up...we found out she has a heart murmur. I've always worried about my kids possibly getting JRA, but never considered the possibility of any other complications. Her Pediatrician said she didn't think it was anything to be worried about and it would probably heal on its own, but she wanted to send us to a Cardiologist just to be safe. I know heart murmurs are common among infants, my biological dad even had one, but you still don't like to hear anything is possibly wrong with your baby. After a long two weeks of waiting, we finally met with the Cardiologist and he agreed, Ruby has a murmur, but it's nothing to worry about. She's gaining weight and grown and a healthy pace and he believes it will heal on it's own. He recommended having our Pediatrician keep an eye on it and if it's still there when Ruby turns 2, then we'll run more tests. Until then just keep treating her the same.

In the middle of all of this, Jimmy decided he was tired of sleeping in a crib. He tried to climb out of his crib twice, but luckily his Grandpa was there to catch him. He's only a year and a half, so we weren't sure if we'd be able to keep him from wandering around the house while we slept, but possibly falling out of his crib seemed worse. Luckily he's made the transition easy on all of us. We converted his crib to a daybed and he loves it...he's so proud of his "big boy bed." He even wanders in there during the day with a few toys to take a little break...mostly to get away from Ruby's crying. He wiggles so much at night that he's fallen out of bed a few times, but he's quick to settle down and go back to sleep. One time he even climbed back in bed and went to sleep on his own! Mr. Independent. 

Having a new baby in the house is rough, but I feel like things are starting to fall into place and get back to "normal." Jimmy's enjoying having a little sister and loves giving her cuddles and kisses. Ruby's full of smiles and coo's and is slowly getting on the same schedule as Jimmy. She even sleeps a solid 7 plus hours every night...so thankful for that! Now I just need to get my JRA under control, but that's a never ending adventure.

6 weeks and 18 months...

I feel like a zombie, so sorry if I ramble on or don't make much sense. I forgot how exhausting it is having a newborn! Not that I thought it would be easy since I also have an 18 month old running around, but holy cow!

Little Miss Ruby is 6 weeks old now and is doing very well. So far she's fussier than I remember her older brother being. She wants to be held all the time...ALL the time...and when she's ready to eat, she wants her bottle and she wants it NOW! Breastfeeding went about as well as it did with my son. Ruby latched on a couple of times and after that it was pure chaos. I was frustrated, she was uncomfortable, so out came the breast pump. Luckily she doesn't care how she gets her milk as long as she gets it and I feel the same way. I pumped for about 3 weeks before I had to start taking my JRA meds again and I was able to build up a decent supply before I had to stop pumping.

Jimmy's had a little trouble adjusting, but what can you expect from a one and a half year old? He's happy to give Ruby a kiss when she starts crying, but then turns around and does something he knows he's not supposed to hoping it will get our attention. We've all done our best to give him enough one on one time, but it'll never be as much as he was used to getting. We even try to get him involved in taking care of Ruby, but it lasts for a few minutes and then he'd rather play with his toys.

Ruby is starting to sleep for about 6 hours most nights, but still has those random nights where she wakes up crying every few hours. My husband's been amazing and gets up with her every night so that I can rest as much as possible, but I still never really feel rested and it's all taken a toll on my JRA. I started taking my Nabumetone again about 3 weeks ago and I still don't feel well. My hands and wrists have been my biggest source of pain...my whole body has really. I feel stiff and sore everywhere. I keep thinking that my meds will kick in any day now and I will feel better, but lack of sleep, changes in hormones and changes in weather are all piling up. I switched to a new Rheumatologist yesterday, someone closer to home and I'm excited to work alongside him and his team to hopefully get my body up and going again. He knows the Rheumatologist that diagnosed my JRA and the Pediatric Rheumatologist who took care of me until she left her practice in hopes of finding a cure for JRA. It actually made me feel more comfortable knowing how much he respected my former doctors because they were great people who made a difference in my life. After a long discussion we both decided it would be a good idea for me to give Enbrel another try. I tried it for about 8 months back in 2008, but stopped taking it because I was getting more infections than benefits. My doctor didn't think they were related to the Enbrel though and convinced me it was worth trying again. I'm starting with just one shot a week, 50mg, along with my Nabumetone until we see how my body reacts. I have to wait for some blood test results to come back and then I'll start my new regiment sometime next week. I'm actually looking to it. Mostly I'm just desperate to feel better and if Enbrel can possibly make it happen, then I'm willing to try it.

It's a girl!!!

Happy to announce we had a healthy baby girl yesterday, March 12th at 9:28pm! Ruby weighed in at 7lbs and measured 19 inches long. So far she's a more petite looking version of her older brother and seems to have the same temperament.

She was breach when we started the surgery and it took some time to get her out. Her first leg came out without trouble, but her other leg was stuck and the doctor struggled for a few to get it out. Even after the doctor pulled her second leg out, she still held on and unfortunately swallowed some amniotic fluid on the way out. It was nerve wracking not hearing her cry for what seemed like a long time. The Pediatric nurse gave her a little bit of oxygen, wiggled her around, suctioned out her mouth & finally the cries started in! The nurse took her to NICU for about an hour to make sure he suctioned all of the fluid out properly and that everything else was flowing as it should and now she is doing great!

So far she's very mellow and has even been able to latch on and have a little bite to eat! Hopefully all of that continues to improve, but for now we're going with the flow and enjoying every minute of it.

Only 2 days left...

I can't believe we only have 2 days left before we finally get to meet Baby #2! I so excited and I'm beyond ready to get this pregnancy over with! So much has happened since my last entry, I even became an Aunt to a gorgeous baby boy!

Where to start? Well, a couple weeks ago we had a check-up with my Gyno and Baby #2 was Transverse...laying sideways. It's back was up under my ribs, explaining my shortness of breath and it was continually stretching out, making my belly look like a giant football. A week later the baby was head down, prepping to join the world and kicking and punching more than ever. Luckily it doesn't matter what position the baby is in since I'm having a C-Section and it can continue to flip and twist all it wants.

As far as everything baby, all is well...it's growing at a healthy, steady pace and doing great...me on the other hand...I've been a bit of a mess. I haven't gained as much weight with this pregnancy, but what I have gained is all going to my belly. Not such a big deal except it's made breathing feel impossible at times and has made me feel more and more claustrophobic as the days pass. It's been so bad that I had to stop sleeping in bed and start sleeping in a chair in our living room. I can't lay flat for more than a few minutes, so sleeping upright in a chair became my only option. It's made a big difference and I've been sleeping better, but my joints are suffering in the meantime. My hips and knees are stiff and achy and I keep waking up with a kink in my neck, but it's better than waking up in a panic because I can't breathe.

Panic attacks have been a huge problem over the last few weeks. I had trouble with them about a week before I had my son, but this time they started in earlier and have been far worse than before. I know it's because I'm so short of breath and I've been able to talk myself out of them when they kick in, but even then, they linger to a point. It's been unnerving never really knowing when they're going to kick in and how long they will last. I was worrying about having to lay flat during my C-Section..no choice but to lay flat...but my doctor reassured me that they can give me something to relax that's safe for the baby and I and all will be well. I only have a couple days left, the baby will be here, the added weight will be gone and my breathing will return to normal. I've dealt with all of this before and I can do it again.

Rough couple of weeks...

"I miss my body." With a laugh my husband asked, "Did you think you'd ever say that?" He was right, those were words I never thought I'd say, but it's true. My JRA has never been easy or fun to deal with, but in its own way it's predictable and manageable...being pregnant on the other hand, your body is no longer your own. Nausea and heartburn are a constant nuisance, the baby kicks and punches everything at all hours of the day and night and as minor as it sounds, maternity clothes suck!

Don't get me wrong, I feel beyond blessed that I have my son and another baby on the way, but some days I can't wait to get this pregnancy over with. I had horrible heartburn for about 3 weeks and sleepless nights from the volcano erupting in my throat were getting to me. JRA flares from having to lay on a wedge on my left side all night made the whole situation even worse. After a few meltdowns I gave in and emailed my doctor. Luckily he recommended a new regiment of heartburn pills and the last week has been more bearable. I'm finally sleeping through the night and my JRA has calmed down again...and being pregnant doesn't seem so bad again. I'm still counting down the days though. :D

As for Baby #2, all is well! Everything is progressing as expected and we finally set the date for my C-Section...Baby #2 will be here March 12th around 6p.m...we can't wait! For now the baby is breach, but since I'm having a C-Section, it ultimately doesn't matter. I'm just happy the baby is healthy and even though I complain from time to time, I'm grateful that this pregnancy has gone so well and has passed by so quickly.

Happy New Year...

It's been a hectic year, but all of it has been worth it. All is well with my second pregnancy, Jimmy is healthy and happy and my parents moved closer to us...oh and I'm typing this on my new iPad Mini...I couldn't ask for more. hee hee I'm beyond grateful for all that we have and look forward to everything 2014 has to offer.

I'm happy to say that we had a 4-D Ultrasound last Saturday and Baby #2 is doing well, but unfortunately slept the entire time so the video is a little dull, but who cares, we were able to see our little munchkin! Jimmy went with us and watched for a bit and then decided he was bored and wanted to play. Can't blame him, 30 minutes in a dark room is a long time for him. The baby's head and feet are very low in my pelvis and it's butt is way up under my ribs on the left side. We kind of figure it's hitting a nerve or something and maybe that's what is causing the pain under my left shoulder blade. It's calmed down for now, so I'm hoping it stays away.

Biggest surprise this past week...I'm no longer Lactose Intolerant!!! YAY!!! My Mom-In-Law made some of her yummy Potato Soup last weekend and I couldn't resist, I had to eat it despite all of the dairy that was in it and the chance that I might completely regret every delicious bite. To my surprise, I kept down every bite and have kept down all of the delicious dairy I've tested since...bring on the fudge, ice cream, pumpkin pie...I've tested it all! I knew when I was pregnant with Jimmy that the Lactose Intolerance could go away towards the end of my pregnancy, but never had the guts to test it. I'm so glad I gave in this year and tried it out...so worth it!

So luckily 2013 is ending on a happy note and I'm hoping 2014 brings even more good health and happiness for all of my family and friends. Happy New Year to all of you!

Rolling along...

Things have been going pretty well lately, but not without a couple hiccups here and there. We finally got my parents moved into their new home and two weeks later my dad ended up in the hospital. Luckily he's back home and doing better, but he kept us on our toes for about a week. Such is a life with COPD.

Thanksgiving was very nice...we were able to make everything with lactose free milk or olive oil, so I didn't miss out on anything but pumpkin pie this year. I love everything that comes with the Fall season...the holidays, the food, time spent with family...and I have to say, even the cold weather this year, although it leaves as quickly as it comes lately in California. I haven't had to suffer through horrible hot flashes and I'm happy to say that I've been able to stop my Prednisone altogether despite the constant changing weather. I still have aches and pains here and there, but nothing like I'd be experiencing if I wasn't pregnant. I'm looking forward to Christmas, but sadly we've been so busy that we haven't had time to decorate, so it doesn't really feel like Christmas time around our house. Luckily Jimmy's still too young to know the difference, so we'll have to do better next year and take it easy this year.

Steadily growing.

Baby #2 is doing very well and was so wiggly at our last visit that we weren't able to get very good ultrasound pictures, so we'll have to wait until our next visit. At our last visit my doctor informed me it was time for the dreaded 1 hour Glucose test...I falsely hoped that I would be able to avoid taking it during this pregnancy...silly me. Unfortunately the results were high, so I had the joy of going through a 3 hour test and luckily the results were completely normal...whew! I've been craving sweets like crazy lately, so the idea of possibly missing out on the few I'm able to eat felt unbearable...dramatic, probably, but I feel like I'm missing out on so much this holiday season from being Lactose Intolerant, that possibly having to cut out even more yummy food became a little overwhelming. Pregnancy hormones didn't help much either. Luckily all is well though, so bring on the apple pie!

Testing out the baby's car seat.

Jimmy is doing well too and amazes me on a daily basis. He's learning so quickly now and we've learned that we have to watch everything we say and do around him because he immediately repeats it. He's starting to use his imagination a lot now which is fascinating to watch. I don't always know what he's thinking while he's playing, or what he wants when he points and grunts at random things, but I love teaching him new things and watching him soak it all in. We've decided that we want to use Jimmy's crib for Baby #2, so I think we're going to try changing his crib to a toddler bed pretty soon and hopefully transition him to a twin bed before Baby #2 arrives. We're thinking it won't be a hard transition considering he sleeps so well at night and during naps and never tries to climb out of his crib, but we may be in for a rude awakening. Either way I figure it's better to try as soon as possible then wait until there's a newborn in the house. Keeping my fingers crossed tightly!