Post-Op MRI results

As of today we are just over 7 months past Henley's surgery. Wednesday we had Henley's MRI scan to show us just how her brain had settled since the surgery. Apparently it takes several months for the brain to settle in its final spot after a surgery like hers. Because they removed part of her occipital bone and thinned out the dura (the lining of her brain), it has changed a little bit in shape and location.

When we left the hospital on Wednesday from Henley's MRI I told Adam that I felt like we had just crossed the finish line of a very long marathon. I felt really good about things and was just so relieved that it was over. Although, this time Adam and I both got to be with her while she was being put to sleep, I was never so thankful to see her face when she woke up from anesthesia. Although my trust is in the Lord, there is nothing more nerve wracking in my opinion than having your child's life completely in another human's hands and you have to be sitting in a waiting room. We were really hopeful that this would be the last time she would ever have to be "under" for an MRI. 

Today was our appointment with her surgeon Dr. Roberts. Right away he walked in and asked us how she was doing. We had nothing but great things to say about her life since surgery. She is eating, swallowing, not throwing up, gaining weight, walking normally again, speaking like she never was before surgery, does not seem to have headaches, and is just overall a much happier little girl. We told him that the surgery had changed all of our lives for the better and we were so thankful. He told us that he thought that was all great news. He said that He and the radiologist were having a difference of opinion regarding her MRI results and that he wanted to show them to us. According to the radiologist, Henley still has some compression on her cerebellum, however Dr. Roberts believes that as far as her spinal fluid flow and amount of fluid able to pass through, it definitely looked different from the pre-surgery MRI. After looking at the MRI with Dr. Roberts and comparing the pre to the post MRI images we agreed that "the proof is in the pudding" and if all of her issues seem to have resolved then Dr. Roberts "would not touch her with a ten foot pole" to do any more to her brain to resolve what the radiologist believes is still brain compression. Because things are not completely cleared up as we had hoped Henley will have to have another MRI next year at this time to see how her brain looks at that point. Between now and then we will just be watching her to see how she progresses through this next year. If we see anything in her that looks like we might be taking a step backwards we will call and address it sooner. Otherwise we will wait to see what the next set of images show. 

Another issue that was addressed at this appointment was the fact that Henley has had a total of 6 seizures or breath holding spells over the last year. We had a 24 hour EEG done back in December and that test was concluded that she did not have epilepsy. However, Dr. Roberts wants us to visit with aneppileptoligist to do a full workup on Henley regarding her seizure potential. 

We left the appointment today not exactly sure what to think. It appears that this chapter is not completely finished and so we will continue to walk in faith that the Lord will use this journey to shape and bless our family. We can not say enough to those of you who have walked with us and prayed us through this trial. We are beyond grateful.

Therapy Update

I finally feel like we have gotten a good start on Henley's physical therapy and are starting to make some progress in the area of physical mobility and coordination. Things are finally starting to look better to me and I feel like Henley is getting stronger and more confident in herself. We met with her therapist this morning and it was actually a positive experience for the first time. For the first time Henley was actually comfortable with her therapist and didn't end up in a full out anxiety attack or in tears. Her therapist is awesome and I absolutely love her and really respect the way she works. However, for some reason its taken Henley until today to realize the she is not going to hurt her or take her from me. Today was a good day. 

Up to this point we have worked with several different therapist for several different reasons. Henley's dietitian has been tracking her growth since before surgery up until now. To give you an idea on her growth situation last year at her 18 month appointment Henley weighed 21 lbs 7 oz. 1 year later on the day of her surgery Henley weighed in at 22 lbs 14 oz which means in one year of trying to pump this child full of every high caloric things we could find she gained a whopping 9 ounces! 3 months post surgery Henley now weighs 23 lbs 14 oz. Which means she has gained and entire pound in three months, Which is amazing. Henley is now actually on the growth chart for her age!

For a while we were meeting with an Infant Mental Health counselor to address some of Henley's anxiety issues and issues with trusting strangers who are in our home for medical purposes. We also addressed some sibling issues that were due to Henley being accustom to having mommy's attention for so much of the time. She was having a hard time sharing mommy with brother & sister and we were trying to really make mommy & daddy equal when it came to comforting. Its been a tricky balance to acquire, but I think we are getting there. For a while it was almost impossible for me to be able to walk out of the house even to get the mail by myself without Henley becoming completely hysterical which in turn made the other two feel like something "should" be wrong with me going to the garage or walking out of the house for a few minutes. It was a crazy time.

We had been doing feeding therapy for the last few months but we have had to stop and change therapist because I felt like what that particular therapist was doing was not working for us. She was precious and I liked her, but every time she came she played with Henley and was working on "making food fun" which is great in theory, but having a picnic on the living room floor for every meal and putting all of our food in Easter eggs is less than practical for our family. I have now been working with dietitians and feeding therapist for a year and I just now feel like we might have conquered eating chicken nuggets without a problem. Feeding my children and meal time is the most frustrating and exhausting part of my life right now. I am anxiously awaiting the ending of this "stage". We start with our third feeding therapist tomorrow.

Speech therapy is still one of the things on the top of my list to work on with Henley. However there are so many hoops to jump through and insurance things to figure out to get the amount of help your child needs if you don't qualify for medicare. UGH. Do not get me started on that. So, we are STILL waiting on speech therapy and most likely once we are finally able to start this with ECI it will still only cover 2 visits a month. Which is silly because Henley would most likely need 2 visits a week. Why does this stuff have to be such a battle!?! Oh well, part of the journey. We will get it figured out, its just another things to be prayerful about.

Pneumonia

Hi friends & family. I realize it been a while since I wrote an update for little miss Henley. I don't have a lot of energy to write now either but really need to ask for some prayers on her behalf. Henley has been sick for over a week. Wednesday I took her to the doctor because she had a fever and a terrible cough. They decided to put her on 3 days worth of steroids and breathing treatments 3 times a day. On Friday morning after doing a treatment she was still having a lot of trouble breathing. I did another treatment about an hour later and called the doctor to tell them it didn't appear to be helping. I took her back in to the office. They listened to her lungs, gave her a third breathing treatment and listened again. At this point he was diagnosed with pneumonia which is what I had feared would be the case. 

We started another round of steroids, a z-pack and more frequent breathing treatments. Today she seems worse than yesterday. You can actually hear the rattling in her chest when you are sitting next to her, and her ribs sink in with every breath she takes. I have done three breathing treatments on her since 5:00 and we have finally put her to bed. Please pray that she can kick this thing before we end up in the hospital with her again.

In addition to that, please pray that Haven and Zane can get over their colds that are not yet & hopefully won't turn into pneumonia.

Post Op Visit with Dr. Roberts

I have really gotten out of the habit of writing lately. I am really trying to seize every moment that is not complete chaos and sit on the floor and just enjoy my babies. Believe it or not its hard to just put everything aside and sit on the floor and accomplish nothing. I'm trying not to care that things are a mess and that some days we stay in our jammies. This is just one of the many ways that God is working on my over-achieving heart.

Henley had her 8 week post op appointment on Friday with Dr Roberts. For some reason this time Henley was not her normal self around the Dr. She closed her eyes in attempt to be invisible to him when he tried to interact with her. This was the first time for her to see him since being in the hospital so she may be a little gun shy of him for a while. On the other hand we were glad to see him because he has helped change our lives! 

He asked us how she was doing and if we had any concerns. We told him that since surgery she had not thrown up (except for one time that was self induced but I am not counting that one). We said that within a week she started talking twice as much as she had before. She seems happier overall and her walking got somewhat better. Our only main concerns were the fact that she has seemed to complain of some
back pain, foot pain and head pain off and on. In addition to that over the last week or so we have noticed her blinking a lot more when she seems to be concentraing on things. It doesn't sound like a big deal but it seemed to raise an eyebrow with Dr R. He told us to watch the patterns of the blinking and that some blinking episodes could be potential seizure activity.... Fantastic.

He told us to try to wait out the complaints about pain and see if they resolve themselves. If they do not, then at our post op MRI in 6 months they will scan the lumbar spine in addition to the brain and cervical spine. She had all three done in October because we were looking for just about everything at that point. Originally those lower scans were normal, so we will just see if anything changed after the surgery. 

At this point Henley is cleared of the "two feet on the ground" rule. However she will have some lifetime restrictions for things like riding roller coasters and other things that are rough on the head, neck & spine. The Thomas family will sadly never have a trampoline either. Which makes me a little sad because I've been waiting my whole life to have my own kids to buy a trampoline for so that I could jump on it! 

Her next MRI is scheduled for September 5th. Let's hope and pray we just get to do all of her therapies until then and no more crazy hospital visits!

On another note, I really want to thank everyone who has brought food and helped out in some way. You have NO idea how much peace that has brought our family just knowing that we didn't have to plan & prepare a meal one day. I have tried to sit down so many times and write thank you notes to everyone and it just never happens. I am so sorry, so please know we are so grateful for every bit of help we receive!

Thank you most importantly to those of you who have been praying us through this journey. There is no way I could every thank you enough for spending time and energy lifting us up to the Lord. We have truly felt prayed for, and it is so humbling.

Thank you, Thank you, Thank you!

7 weeks already???

Wow, today marks 7 weeks since Henley's surgery. Hard to believe how fast the time has gone. Although I don't have any new information I wanted to say that Henley has had zero illness since the surgery and no vomiting!! Praise the Lord! I can't tell that her eating has gotten better, but hoping the feeding therapy will start paying off soon. 

We STILL have not started physical therapy which is one of my main concerns to address with her walking and overall muscle tone on her right side. We waited forever to be cleared for PT, and now just waiting on an appointment. Speech is another main concern for her and so I am going to have to get that going soon as well. There is just so much to manage.

We have our follow up with Dr Roberts next week and I am looking forward to getting to talk with him again. I want to ask him about potential nerve damage/issues. Lately it seems like Henley says "my back hurts mommy" or "my foot hurts" she says something hurts just about every single day. I am honestly not sure if this is how she is going about getting attention from us or if something actually hurts. It's a tough call with a two year old. Part or me thinks surely she is not making this up? Why would her back/foot/hands be hurting? It's confusing.

On a totally separate note I want to ask for prayers for a sweet little 3 year old girl named Olivia. I was blessed to be able to meet her and her mother (Heather) back in November. Olivia had undergone the same surgery in August for Chiari that Henley just had in January. I have been following her progress over the months. A few weeks ago at her 6 month post op MRI they found that her surgery had not been successful. Because of this they have to do the surgery again. This time with the duraplasty. This sweet baby is having surgery first thing in the morning at Cooks. Please join me in praying for her and her family.

1 Month Post Op Appointment

Henley walked into our bathroom yesterday morning and I just had to stop her and take this picture. She looks so grown up all of a sudden. Slow down time!!

Henley had her 1 month post op appointment the other day and it went well. We did not see Dr. Roberts, but his physician's assistant Grace. I just love her because she will explain to me as much as I want to hear about the procedure itself. It was great to have that information clarified. She looked at Henley and said that she looked great and that she and Dr. Roberts have never seen any child appear to bounce back to normal life as Henley has. She signed the orders to resume occupational and physical therapies and so those will begin next week. 

I feel like we have had a vacation from therapies for the past month because Henley was supposed to be recovering. However, now that it appears that she is out of the immediate "recovery phases" we move on into some pretty frequent therapy sessions. I am looking forward to both OT and PT because I am anxious to get this girl on track for a normal child her age. Her walking still isn't fabulous and she still needs help coming down the stairs so hopefully those things will improve. We are hoping to improve her eating skills with OT as well as some other things. We will continue to work on separation anxiety issues with the counselor and meet with her dietician regularly. We are not ready yet, but when we are we will start speech therapy as well. 

We did meet with her dietician today and Henley had gained 7 OZ!!! This is HUGE for her. She has not been able to gain weight for a long time and all of a sudden 7 oz in 3 weeks!! Henley is 2 yrs and 4 months old, and she weighed 23 lbs today. Praise the Lord.

As far as the doctors appointment went she was also cleared for being able to submerge her head in water. I am seeing some swimming lessons in her near future. She loves to swim and so I am sure we are going to need to re-address swimming skills as a whole before summer starts. Henley has also been cleared for running which is great because its nearly impossible to keep her from running. She still has to abide by the "two feet on the ground" rule which prevents her from climbing, jumping, riding tricycles or anything that requires one of her feet not be on the ground. Hopefully those rules will subside at our next appointment with Dr. Roberts at the end of March. 

As far as Zane goes. Well, I am certain he is going to need some feeding therapy himself. He still throws up almost daily. Just before sitting down to write this I had to strip him of all of his clothes and give him a bath in the kitchen sink. So very typical for my day, but I still feel defeated every single time it happens. Sigh... This too shall pass....right?? 

Haven is doing alright. She does act out quite a lot when its just me here with all three kids. I understand that she just wants my attention, and life for her is not fair, however I am having a hard time trying to be sensitive to her while dealing with my own exhaustion and stress of dealing with the other two. We are in a very sassy stage with her, and trying to teach her that her attitude is not acceptable without just getting completely fed up with her in the process is proving to be quite difficult. After all, she is the only one who can actually communicate with me during the day and almost all of her communication is negative. Its exhausting to say the least. I just need to be praying for more patience with her. And maybe I should take this time to also apologize to my own mother for being so sassy with her growing up. Sorry mom.

Other than that, things are really great. Ha!

Serving one another

After a conversation with another friend of mine who's family is in the trenches of what it means to live life with Chiari, I feel compelled to write this entry.

Adam and I have been so blessed to have the support we have. I do not know what we would be doing right now if it were not for my parents, our church family and friends. I am sure this goes without saying, but neither Adam nor I have ever experienced anything so difficult in our entire lives. We both live every single day right now in a constant state of physical tension, and the responsibility never ceases. We have three children ages 4 and under, and it's safe to say that all of our worlds have been completely rocked this past year. I suppose I'm saying all this to say that if Adam and I were not both committed to running our family as a team effort, I can completely see how this would have rocked our marriage as well. The day Adam and I got married we agreed not only to our traditional vows of loving each other till death do us part, but we agreed to face life as a team. To be on the same team and to work together for a common goal. To face parenting our children as a team. To fight with each other and not against each other. To give each other grace because we are both human and flawed, and to approach life without expectations. Because when we have expectations of how we think people should respond to certain situations, we are almost always disappointed and let down by how they actually respond. 

The reason I am saying all of this is because I want people to know that even with a "good marriage" going into a situation like we are in, it's still so hard when you are living every day in survival mode. For this reason we have been exponentially blessed to have the support we have received from everyone around us. I do not honestly know how we would be doing anything that we are doing right now without help with meals, childcare, laundry, cleaning, etc. The cost of those things coupled with the cost of medical bills, therapies, special foods, doctors appointments etc can just be too much to handle.

Most days I feel like we are literally in battle against satan, fighting for our family to survive. There have been specific times in this journey that I have felt like we were being backed by thousands of believers who were praying us through the battle. We also know that there are those who are standing on the front lines with us in the battle to keep our family functioning. Although this can be so lonely and it's easy to feel like no one understands what you are going through, we have been blessed to feel like people are there to listen, cry to, count on for help etc.

Through this trial in our lives we have met a few other families who are in similar situations. Families who are in the trenches right now and also fighting for their families to survive a particular battle. Families who don't feel like anyone could understand what they are going through, but need support all the same. Families who don't want to ask for help, but are dying for someone to step up and offer. Families who don't want to be a burden, but could really use a meal or a night out away from their kids to be able to re-focus. 

I am saying all of this to say that there are people everywhere around you hurting. If you just open your eyes and look outside of yourself you will see it. God has called us to "Carry each others burdens, and in this way you will fulfill the law of Christ." Galations 6:2. What I am asking is for you to be present. Be an active part in the kingdom of God. Be an active part in someone else's life. Don't think that "someone else is probably calling, texting, taking care of them". Don't think "I don't even know these people very well, they will think its weird". Just step up and do something. You don't have to necessarily cook a fabulous meal and take it over to them, we live in a world where people deliver. You can send emails in a second. You can send gift cards and a note. I can honestly say that some of the most encouraging messages I have received have come from people who I have never met and will probably never meet.

So please, if you are reading this, pray that God opens your eyes to what is around you. Encourage someone today. Send help, offer help. Send a text or an email. Let someone know you are praying for them. You can probably count on the fact that you will be the only encouragement someone gets today. Do not be idle in the kingdom because that is exactly what satan is counting on you to do.

Zane's MRI Results

This morning Adam and I were able to leave the hospital with the images from Zane's MRI. We both felt pretty confident that even without a formal MRI report from the radiologist that we could tell, based off of our own experience weather or not it looked like Zane has Chiari. We have both spent lots of time looking at MRI pictures of what Chiari looks like and what a normal brain looks like. weather or not it looked like Zane has Chiari. We have both spent lots of time looking at MRI pictures of what Chiari looks like and what a normal brain looks like. 

When we pulled up the images after the MRI we both felt like Zane's brain looked absolutely normal and there was an obvious difference between his brain and Henley's brain at that age. 

I got the phone call about 20 minutes ago from our pediatrician's office with the news that his MRI report was totally normal and he does NOT have Chiari! I told Kim that was great news and I was so glad to hear that. She said, "I know when we got the report from the radiologist we all cheered!". I love that our doctors office is on board with us and that they too are rejoicing with us. 

Praise the Lord for this great news. I finally can put this little anxiety to rest! Now, if we can just figure out why he throws up while eating that would be awesome. We at least can rule out that its a brain thing.it's a brain thing.its a brain thing.its a brain thing.its

Zane's MRI

They just took Zane back to start the MRI. Since they are doing brain and C-spine, it will last an hour an a half. He was so good during the time that the nurses were checking him in that he had them all wanting to take him home. Pray that he does well in recovery and has no adverse effects from the anesthesia.

UPDATE:

Zane is out of anesthesia and did fine. At one point they did have to give him a breathing treatment because his oxygen level dropped, but he seems okay. He is pretty hoarse and has a bit of a cough, but he should be fine. The MRI results should be in within 24 hours so we will post when we know more. Thank you for the prayers.

Henley's MRI images

Here are the MRI images from Henley's surgery. The left picture is before they made the incision, the right picture is while they are in the middle of the surgery.from Henley's surgery. The left picture is before they made the incision, the right picture is while they are in the middle of the surgery.

 In the left picture you can see where there is a large amount of white at the base of her skull. From what we understand, this is the occipital bone that they removed (as seen missing in the lower picture) and then they thinned out the dura (covering of the brain)  so that her brain would have more space to move around. Because the surgery is in progress at this point you can see the extra space that was made, but can not fully see the way the brain will sit after everything is closed up. Notice the black spot on the right picture. This is where the back part of her head is open. Disturbing, I know. I am excited to get another MRI in 5 months to see how this all looks once it is settled down inside of her head. 

Restrictions

If anyone can tell me how to make a 2 year old stop running & jumping I would greatly appreciate that.

I was talking with a friend tonight about Henley and was telling her that I think Henley feels so much better than she has ever felt before in her life. For once she does not have a constant cranial pressure that made her feel so yucky. It appears that she finally feels some relief from that pressure and because she is not constantly throwing up and having headaches she wants to be running around like a normal two year old....which is a problem. Because she just had brain surgery! For some reason, taking the logical approach with Henley and trying to explain the reasoning for her restrictions does not go over well. Haven partially understands the restrictions of "no running, jumping, climbing, going up and down stairs, rough housing" etc. However, because Henley feels so good, she doesn't see the need for the rules. Because Henley wants to run and play it makes it difficult for Haven to remember the rules.

Honestly it doesn't seem fair to constantly be saying "Haven, no running, your sister can't be running". "Haven, don't get up on your bed, Henley can't do that." "Haven, don't climb on that, because Henley will want to do it too." We just don't know how to control the situation because if we let Haven do something, Henley doesn't understand why she can't too. I know its only temporary, but its just hard. On top of Henley's restrictions we have Zane who is pulling up on everything, climbing onto things, trying to stand on his own and pull things over on himself. This is making for some very challenging times. We spend almost every single day at home because going places is just not an option for us right now. The only place we go is to take or pick up Haven from school. Frankly, being in the car is the least stressful place for me because all three of my kids are strapped in to a seat they can't get out of! If only I could keep them in car seats in the house. Imagine all of the things I could actually get accomplished if that were the case.

Right now, our house looks atrocious. It takes me all day long to get the dishwasher unloaded and loaded back again. Its rare if I can even get one load of laundry done because just as I go to gather up laundry someone gets into something they shouldn't or we have fighting, crying, diapers to change, or someone is all of a sudden starving. I have come to the conclusion that there is always going to be something more pressing than the laundry and dishes. Thankfully we have had dinners being brought over. I am pretty sure my family would not be eating dinner if that were up to me right now. I am so overwhelmed and beat down by the end of the day that dinner is the last thing on my mind. I just want to go to bed! I am doing my best to manage it all, but it is really tough. This mommy stuff is not for sissies! 

So Henley broke the streak we were on of "days without vomit". I'm not sure exactly what happened but she got choked on something and had an "accident" yesterday. I felt defeated. Tonight Zane threw up all over Adam. Sigh....it was nice while it lasted. Ha! People have asked me if we think Zane might have Chiari too. I personally think he needs to be checked for Chiari since we know that it can be genetic. Adam is not so sure. I am pretty sure that I am hyper-sensitive to the issue, but Zane does throw up more than any average child and its always when he is eating or drinking. We have his 1 year old well check appointment on Friday, so like everything else...We will cross that bridge when we get there. I suppose those of you who are praying, please add this one to your prayer list.

Incision site 2 weeks post op

Here are the pictures of Henley's head at two weeks post op. I know that there are a lot of people like me who are curious to see what this looks like, so here you go. The stitches have fallen out/dissolved and it looks really great. She has had no infection and what you see is just the normal redness. It should eventually fade so much that its barely noticeable.

2nd Week Post Op

Henley is continuing to do really well. Her scar is looking better all the time and from the looks of things, part of the stitches seem to be dissolving. She attracts quite a lot of attention when we go out places because everyone who sees her wants to see the back of her head. I don't blame them, its pretty intriguing. She has been off all pain meds since Saturday and seems to be doing okay. 

As far as symptoms are concerned, Henley's walking has absolutely improved overall. We have only noticed her walking funny once and that was yesterday. It didn't last all day, but we did notice her seeming to be very off balance at one point and not being able to really get her feet under control. It does not appear as if she is dragging her right foot like she was before surgery or "skipping" as Haven calls it. I'm still watching her walking like a hawk to note any oddities, but so far things are looking promising. 

Her eating has not drastically improved, but she did gain an ounce and a half this week according to the dietician. She is still not even on the growth chart for her age. She weighed 22 lbs on Friday. 

For a while I thought we were in the clear as far as the diarrhea was concerned, but apparently not. I know the cause of that is her being lactose intolerant and the fact that all she wants to do is eat cheese on everything. However, I have heard about some people having a major surgery like hers and other symptoms changing or improving that were not even seemingly related. I was kind of hoping for that, oh well.

Two huge changes we have seen are that Henley has had ZERO bouts of vomitting since surgery!! No idea if it will continue, but everyday without her throwing up is a small victory for this household! There have even been times where I have rushed her to the bathroom out of pure reflex to a situation, but then she managed to get through it without throwing up. 

The other thing that we have noticed a huge change in is her speech. Even other people who see Henley on a pretty regular basis have mentioned that she seems to be talking a lot more than she was before surgery. In particular, she is putting 3-4 and even 5 word sentences together where as before we rarely heard 2-3 word sentences. Her speech is even easier to understand. Tonight as I was leaving her room she said "I love you momma" not perfectly clear, but man how I have waited to hear those words out of that sweet baby!room she said "I love you momma" not perfectly clear, but man how I have waited to hear those words out of that sweet baby!before we rarely heard 2-3 word sentences. Her speech is even easier to understand. Tonight as I was leaving her room she said "I love you momma" not perfectly clear, but man how I have waited to hear those words out of that sweet baby!room she said "I love you momma" not perfectly clear, but man how I have waited to hear those words out of that sweet baby!

All I can say is PRAISE THE FATHER FOR HE IS GOOD! 

We have entered into the next stage of our journey with Henley. Lots of Therapies. She will be seeing 6 different specialists during the weeks and months to come to work on getting her to where she needs to be. Therapies will include; speech, physical, occupational, nutritional, feeding and counseling. She will also be seeing her other Doctors regularly. specialist during the weeks and months to come to work on getting her to where she needs to be. Therapies will include; speech, specialists occupational, nutritional, feeding and counseling. She will also be seeing her other Doctors regularly. Specialists occupational, nutritional, feeding and counseling. She will also be seeing her other Doctors regularly. specialist during the weeks and months to come to work on getting her to where she needs to be. Therapies will include; speech, physical, occupational, nutritional, feeding and counseling. She will also be seeing her other Doctors regularly. 

Henley is scheduled for a visit with the surgeon at the first of March to check her progress etc. We will meet again 4 weeks after that and then again at the 6 month post op mark for another MRI to see how things have settled. I am already looking forward to seeing those images.

Speaking of MRI images, I do plan on posting the images from the day of surgery. Adam and I have both spent lots of time looking at them and they are pretty fascinating.

1 Week Post-Op

Today marks exactly one week since Henley's surgery. I can not believe its only been a week. After being discharged on Thursday we came home and quickly tried to get our family back into a "normal" routine. I felt like I was re-gathering all of my little chicks back into their home. I felt like two little pieces of my heart were missing while we were gone. Henley was so happy to be back in her own home and able to sleep in her own bed.

Henley has been completely off the narcotic meds since Friday. She was refusing to take them because of the taste so we have been alternating Tylenol and Advil every three hours. I can certainly tell when she has gone too long without pain meds because she just looks like she is in pain. 

As far as her symptoms are concerned, we were told not to be looking for a change for about 3 months or so. Her brain really needs time to settle and calm down after the traumatic encounter with medical tools. So we will be patient. However, I will say that while in the hospital, both Adam and I thought her walking had gotten significantly worse, but now it appears to be back to normal. I have not noticed any limping or listing, but those things were also noted mostly when she was also having migraines or increased cranial pressure, so it is possible that the constant stream of pain meds is keeping her from having any of that. I suppose we will have an adequate picture once she is off all medicines.

Other than that she is really doing remarkably well. I just can not believe that she was having brain surgery a week ago today. Unless you see the back of her head, its would be impossible to know what had just happened in her life. Praise God for the resilience of small children. 

As far as the rest of us are concerned, well.... we are tired. Adam has gone back to work and so I have been on my own during the days. I told someone yesterday that, before the surgery, I don't think I realized how little I actually watched my kids throughout the day. I used to be able to get so much more done while the kids were playing upstairs or entertaining themselves. However, now I am having to have my eyes on Henley almost all of the time and be within grabbing distance of her in case she chooses to climb on something. Oh my goodness, this is an exhausting task all by itself. However when you add in the two other children, one of which who is trying to learn to walk himself and pulls up on everything and is not necessarily stable, it makes for a very complicated day. 

As always though, God's mercy is new every morning and He is constantly using people to provide for our every need. Yesterday my good friends Randi and Taylor called to tell me that they were dropping their kids off at school and coming to help me for a couple hours. When they walked in at 10:30 they instructed me to go and take a shower and eat something. They asked me what I needed done and so I told them that the kids still had not been fed breakfast. SERIOUSLY....at 10:30 am??? Mother of the year goes to...... Anyways, they were so helpful to be my extra pair of eyes and hands for a couple of hours. Thank you God for blessing me with some wonderful Godly women who are attentive to even the smallest needs. How in the world do people make it through these valleys in life without people like these girls?

Another huge blessing we have received has been meals & gift cards. I can not tell you how helpful it is to receive little blessings by mail and at dinner time. I have absolutely zero time to do anything around here and so every little bit of help and encouragement is huge to us. Thank you so much. You guys are such a blessing to us and we are learning how to love and serve differently every single day.

Life After Surgery

Well, we've been home now about 30 hours and things are slowly progressing back to normal.  It's definitely been a challenge keeping an eye on Henley and our other 2 children while still trying to do stuff around the house.  Henley has managed twice now to make it all the way up the stairs without us even knowing.  Luckily, as of yet, she has not had any falls or accidents.  With the exception of a slightly stiff neck, she really looks like nothing even happened to her.  We are switching off between ibuprofen and tylenol throughout the day and have not even needed the hydrocodone, which is fortunate because she hates the taste of it.  Even Dr. Roberts commented that she looked at 24 hours like most people do at 3 days post op.  He explained that the more muscle mass is located around the neck the more difficult the recovery.  This is the main reason Henley has done so well in recovery because she has very little muscle mass.

As far as Henley's symptoms, Dr. Roberts told us that we really can't expect to see any reduction in symptoms for at least 3 months, and that the space around her brain could continue to decompress for up to 6 months.  We are to follow up with Dr. Roberts' NP in a month so they can check her incision.  We follow up with Dr. Roberts in 3 months to discuss how she is doing symptomatically.  He also mentioned that we will have an MRI done in 6 months.

Thanks so much to those of you that have signed up to bring us food. This is really one of our most pressing needs at the moment, and will become even greater when I return back to work next week. For now we leave you with the before and after pictures.

Recovery Day

We had a pretty good day today considering how the morning started out.  Once we got her all calmed down from the nurse grabbing the back of her neck at the incision site, we discussed with the nurses about taking out her IV's for good.  Luckily, soon after, Dr Roberts came by to check in and he said we could go ahead, but if it got to a point where the oral meds were not working then they would have to go back in with an IV.  We were fine with that since the IV's were really causing the majority of Henley's pain and discomfort.  She had a great breakfast and played in the room most of the morning.  At some point we decided to let her down and walk, which made the nurses very nervous.  We both had to hold her hand, but she walked a couple of laps around the floor without incident.  We had a scattering of visitors throughout the day that seemed to be perfectly spaced apart.

Dr Roberts came back by around 5:15 to see how she was doing.  He was amazed that she was sitting up and moving around as much as she was.  We let him know that she did just fine on oral meds and was really getting back to herself.  He told us that he wants to see how she does tonight and if all goes well that we will be discharged in the morning.  It's so crazy to us that after less than 48 hours of recovery we will be heading home.

We are finally getting settled in for the night.  Henley has been awake since 3 am this morning and has not slept all day.  We are both exhausted and are hoping that tonight is a little more restful.  We will post in the morning when we are officially discharged.  G'night everyone.

1st morning post op

Last night was a little rough. Henley didn't sleep much and kept us up most of the night. She ate chicken soup & crackers around 3:00 am. She has been taking in lots of fluids as well.

So far we have been able to keep the pain under control without morphine so that has been good.

Henley, being a tad bit OCD was not having all of the medical bands, electrodes etc all over her body so we had to find a way to consolidate that stuff so that she would actually settle down & go to sleep. 

She had two IV's, one in each foot which was brutal. However, it wasn't long before she pulled one out and had the bed covered in blood. They decided that since she was doing so well with her liquid intake and was not taking the IV pain meds that they would go ahead and remove both IV's and if things got out of control later that they would put it back in somewhere else. 

Shift change happened about 7:30 and already our nurse is not on my good side. She tried to "help" Henley sit up and instead of asking us to do it, she just reached around and started to pull her up by the back of her neck/head. It all happened so fast neither Adam or I could stop her. Henley immediately started screaming and crying and I thought she was going to stop breathing. It took everything in my power not to say something ugly to her or punch her in the face. I just said "why don't you go grab her pain meds now."

We have already seen Dr. Roberts this morning and he was glad to see how well she was doing. He said we will see how the day goes and possibly throw around the idea of going home tomorrow. I know right? That seems crazy, but we will see how the day goes.

She is currently enjoying her breakfast omlette and watching Tangled.

Settling in

Adam and I were both typing an update at the same time and didn't know it. So here is a bonus update. 

We are finally starting to settle in for the day. Recovery for Henley was really rough to say the least. She had to be given 3 doses of morphine before they even released her from the recovery room. She was obviously in a significant amount of pain. 

Before they let us see her she had a lot of nausea, and that caused her to spend a little more time in Recovery 1 before getting to Recovery 2 where we could be with her.

When we got in the room she was very upset. I was able to get in the bed with her and hold her. At one point while she was crying she said "I'm so sorry mommy!" It seriously ripped my heart in two. I can not even imagine what she must be thinking. Please pray that she doesn't remember any of this.

Several times during recovery her oxygen dropped as low as 78 and she had to be given oxygen. She also started running a fever and was given Tylenol for that. 

Once things started to calm down for her they moved us to a room in the main hospital we are in rm 4202. Please keep in mind that visiting hours are over at 8 pm. Also, if you are sick or have been around any sick children, please don't not bring your germs to this sweet baby girl.

In a Room

We are now in our own room. We spent an hour with her in recovery and it was a challenge. She had thrown up earlier in recovery so they wouldn't give her anything to drink. They were able to give her a popcicle which helped some. She was very fussy and there was really nothing we could do to make her happy. They finally got us into our own room and we are settled in and doing better. Henley is eating crackers like it is her job and we're giving her a little juice at a time, which she seems to be tolerating. Dr Roberts just came in and said we could continue to progress her diet slowly. As soon as she can come off if the IV meds and tolerate pain with oral meds, then we can go. At this point, she looks very good considering what she has just been through. 

Leslie and I are pretty worn out from the day, which was filled with lots of visitors, starchy food, & love. Thanks to all who came to the hospital and also to those who have been fervent in prayer all afternoon. Please pray for a good nights rest for all of us.

This will most likely be the last update of the day. We'll try to send one out in the morning sometime. Love you all.

Here we go...

They just took Henley back. Prayers appreciated. We should have updates frequently throughout the day. We are in the surgery waiting room on the second floor in the main part of the hospital.

UPDATE 1: We just got our first call from Janee in the OR. She said Henley cried a little bit because she wanted us. They got her calmed down and under anesthesia. She is all set up and they are about to do the first MRI to see what they are working with.

UPDATE 2: They just finished the MRI scan and started the surgery.

UPDATE 3: The OR nurse just called and said that the Plan A part of the procedure is done and that Henley's vitals are strong and she has not needed any blood. They are preparing to do the second MRI, but the nurse said that Dr Roberts feels like they have done enough. We should have another update in an hour with confirmation of how they will proceed. 

Lord God please give the doctors and nurses Your wisdom and discernment during this next hour. Make it clear to them that they have done enough so that they can feel good about closing her up. 

More updates to come.

UPDATE 4: Surgery is done. Dr. Roberts came out about 30 minutes ago to let us know they were all done. They only had to do Plan A and they found that the back part of her C1 vertebra was not fully developed anyway. The recovery nurse just came out and told us that she is awake and doing well. We should be able to see her within the hour. Praise God for a successful outcome. Now we pray for her to respond well and recover quickly. 

More to come.