You might be wondering where I've been again?
I'm still here. Still swimming :) But life has been pretty crazy on our side of the world. Mainly, we've been spending quite a bit of time at the doctors with my little girl.
When she was born, she had a little skin tag on her lower back. Our doctor promptly removed it but advised us to get her back checked. After multiple tests, aka xrays, ultrasound and finally an MRI last Friday suspicions were confirmed - my sweet pea was born with "tethered cord syndrome". When we went for the MRI, she was sedated and kept for observation afterwards due to her young age. We spent 15 agonizing hours locked up in a room with a myriad of nurses coming in and out, with my poor baby covered with all kinds of cords - and she was NOT sleeping or sleepy at all! She had two 30-minute catnaps and was so uncomfortable and tired of people bugging her all the time. And yes, even sedation cannot make this girl nap :) On top of that, she was up half of the night due to being so overtired. But this test also revealed that she has some issues with her kidneys...
We are not sure if the two things are related or not. We will meet with the neurosurgeon on the 19th to discuss our next step. At this point she doesn't show any symptoms of her condition (which is awesome) but we, honestly, don't want to wait until she does because any damage caused by tethered cord is irreversible. At some point, possibly in the near future, she will need a surgery or, potentially, three...
It breaks my heart to think of what my amazing little princess will have to go through:
She is the sweetest little girl. She loves to smile, hardly ever cries and adores her siblings and parents. She doesn't deserve it...
It's not easy for me to write all those things. We are trying to stay positive and keep faith but, honestly, we are tired, really, really tired. It seems like every time we turn around the corner, something else just hits us in the face... The past few weeks all I wanted to do was hold my babies closer. All four of them...
Because that's all that really matters...
I hope I will be permanently back soon from my constant impromptu blogging sabbaticals, even if it's just to keep you updated. I have so much to tell you and we will also be tightening our belts even more to pay off all of these medical bills (and I will really need your support to be able to do that!)
But right now I just want to thank you for your prayers and for not forgetting us in these challenging months...
Lena, thank you for the update. Sending you a big hug and blessings for your little princess!
ReplyDeleteThe poor little thing. I didn't know what Tethered Cord Syndrome was so googled it. Hope the Drs can sort it out sooner rather than later. Good luck and hope you're all ok
ReplyDeleteCarolx
Hi Lena,
ReplyDeleteMy thoughts & prayers are with you & your family.
Take Care,
Rhonda
Oh Lena sorry to hear about your little girl. I hope she gets through all her medical issues with success. She is lucky to have a loving family and of course she will always have the support of her twin brother who will look out for her!
ReplyDeleteSending positive vibes your way from Ireland.
I can feel how incredibly tired you are,. But remember, this too will pass and all will be well on the other end. In the meantime, my positive thoughts and prayers are going your way.
ReplyDeleteso sorry to here about this, she is such a sweetheart. Hugs from me,
ReplyDeletePrayers coming your way. It's very stressful, for parents, when children are ill and go through so much.
ReplyDeleteMany blessings to you.
Sending positive thoughts your way! Poor little angel! Hang in there - she will be ok.
ReplyDeletePrayers for the very best outcome to all these issues.....your baby gets some medical help and you and your DH get some rest.
ReplyDeleteHugs too!
Prayers and hugs for you and your family. Take care, my friend.
ReplyDeleteLena, please know that I am praying for you, your precious little princess and your whole family. I can empathize with what you are going through- I had to spend a lot of time at the hospital when my daughter was a baby due to medical issues. It was very hard for me because I felt for a time I was living at the hospital trying to be there 24/7 for her and I had another child at home needing his mommy there too. It was tough, but I can say that, by God's grace I got though it- and so will you. You are stronger than you realize and you will get through this time and be able to spend many happy times with your lovely family! Hugs to you, my friend. xoxo
ReplyDeleteI am so sorry to hear this Lena. I had never heard of this syndrome before. Your daughter is beautiful.
ReplyDeleteI will be praying for your little girl and all of you.
ReplyDeleteScary, scary. Such a blessing to have amazing medical technology nowadays where they could catch it so quickly and have a treatment plan. I know the whole thing must be horribly overwhelming but Heavenly Father will watch over you. <3
ReplyDeleteLena, I am so sorry for the difficult time you are all going through. May God be with you all at this time. Sending lots of hugs and many prayers for you each and especially you sweet baby girl. Sharon. xx
ReplyDeleteI am so sorry you and your daughter are going through this. Sending special thoughts and prayers for the entire family.
ReplyDeleteI had never heard of that before - thanks for the education. What a blessing that you got that checked out so early and are aware of it. Keeping you in our prayers.
ReplyDeleteMy heart goes out to you and your beautiful family Lena. Sooner than later seems to be the byword for this condition and looks like the doctors are on top of things. I will keep "Princess" in my thoughts and prayers. HUGS!
ReplyDeleteOur son had this surgery when he was nine months old. Surgery was a success. He is 16 and passed all the milestones/hurdles they give you after this surgery. Prayers for your family.
ReplyDeleteYour little one is in my prayers, as are all of you. I had never heard of this. It sounds like you are very fortunate to have it diagnosed so early. Take care and get some rest.
ReplyDeleteThinking of you all Lena. I'm sorry you're all going through this,
ReplyDeleteOh Lena my heart goes out to you and I will keep you in my prayers.
ReplyDelete{{{{Lena}} }} I'm so sorry to hear this! I will be praying for your sweet baby girl that she heals quickly. Thinking of you and your family and sending positive thoughts your way...you can do this... xoxox
ReplyDeleteI've read your blog for a while but rarely if ever comment but omg!,, my seven year old was diagnosed with tcs in November after a long challenging two years of incontinence and deep fatigue with no answers.... We are slated for surgery in March. From our research and consults with two renowned peds neurosurgeons, be glad they caught it now....nerve damage is permanent and our daughter will live with the consequences forever :(. You are in my prayers as we walk a similar path. Take care.
ReplyDeleteDaybyday
I'm so sorry!!! I will keep your daughter in my prayers too. Please, please, let me know how her surgery goes. And hug your little girl for me!
DeleteI am so very sorry. My thoughts and prayers are with you and your family.
ReplyDeleteHey there...we had the detethering last Wednesday and are home safely. I'm not sure if there is a way to private message but if so I'm happy to share our experience thus far.
ReplyDeleteYes, yes, please! My e-mail is: frugalandthankful (at) gmail (dot) com
DeleteHi Lena, I've been missing your blog posts but realise you have much more important concerns taking your time right now. Just wanted to let you know that I've been thinking about and praying for you all. Take care, hugs, Sharon x
ReplyDeleteHi Lena, just to say my thoughts and prayers are still with you all. Sharon xx
ReplyDeleteWe are thinking of you and your family! i hope the babies are growing healthy and your absence is simply you having too much fun!
ReplyDeleteHi Lena, I've been thinking about you a lot lately. I really hope you are just very busy and focused on your beautiful family. Just know my thoughts are with you. Miss you!
ReplyDeleteLena, good thoughts and wishes are being sent to you through cyberspace!
ReplyDeleteI am praying for you and your family. I hope your sweet baby girl is doing better. *hugs*
ReplyDeleteLena, I was thinking of you and wondering how you're doing. Hugs!
ReplyDeleteIt's been so long since we have heard from you. Hope that you and the family are doing well. diane
ReplyDeletemiss your writing, hope all is well. Know that many of us out here in blog land miss you
ReplyDeleteHi Lena~
ReplyDeleteJust wanted to drop you a note to say I'm thinking about you and your family.
Hope all is well...
Miss you~
Lynn @ Turnips 2 Tangerines
Lena,
ReplyDeleteI check your blog often hoping for an update on your beautiful family. I have always been inspired by the courage and strength that you show. Many prayers for your little girl.