Neurologist

We went to the neurologist today for a check up. He is planning on Ruby starting the ketogenic diet at DeVos Children's Hospital on January 13th. He said we should plan on staying in the hospital for at least 3 days, maybe a few more, depending on how she tolerates the diet. He seemed to think there is a good possibility Ruby would do well on the diet; around 70% of people on this diet see a reduction in seizures. Hopefully we will see results right away, but he said we would for sure keep her on it for 3 months to see how she does. If it stops the seizures or reduces them drastically, then we would probably stay on it for a few years and wean her off her other meds as soon as we can. If she doesn't do well, then we would wean her off the diet and try something else again. Unfortunately, there aren't a lot of great options after the diet so we are really hoping this works. Her seizures have increased a little in the past week, but that is probably because we are weaning her off the steroids. The doctor doesn't want to mess with her meds right now until we see what her body does on the diet, so for the next couple of weeks we are just keeping things as they are.

We continue to see smiles and hear a lot of cooing from Ruby. Her legs seem to be getting stronger, but her chest and neck muscles still seem very weak which has been affecting her breathing and swallowing. Also, because of this, she can't usually hold her head up. We are praying she gains strength in this area as this is a crucial developmental step.

Thanks again for all your support and prayers. Ruby is a blessing and we thank God for what He has done in Ruby's life. We continue to anticipate Him doing amazing things.

Thanks

Thanks to all of you who prayed for Ruby today! It was powerful to be at church this afternoon surrounded by people who care about Ruby and listen to them lift her up in prayer. We are blessed to have such a great support system and such a great God. We are excited to see what He is going to do through Ruby. Thanks again for your prayers today; we appreciate each of you!

Prayers for Ruby

Jane Lemmen, a family friend, has graciously offered to organize a prayer gathering for Ruby. Here is the info if you would like to come. Thanks for your support!

Dear Friends and Family of Mark, Kelli, and Ruby Ten Haken:

You are invited to join for a time of prayer, on behalf of the TenHakens, on Sunday, December 28th from 4-5 p.m. in Room A of Calvary Christian Reformed Church in Holland.

I'm sure many of you, like myself, have been frustrated for Mark and Kelli as we can only sit by and watch as Ruby continues to struggle with seizures. We feel like we can do nothing. And, yet, we can do MUCH, by lifting them up in prayer before our Great God. We know prayer changes things and that God can heal. So, together, let's petition heaven on their behalf.


In Him,

Jane Lemmen

A New Diet

We talked to Ruby's neurologist yesterday about what to do next since we haven't seen much improvement with Ruby's seizures. He had talked to a few other doctors in his practice and they believe that we should put Ruby on a special, high fat diet called the ketogenic diet that can control seizures in some kids. I asked about the steroid shots (ACTH shots) but the doctor feels there are too many side effects and complications with these shots to try them yet. They can cause crazy high blood pressure, weight gain, out of whack blood sugar levels...etc. So, we are going to try the diet first and if we have to do the shots we can later on, but we would like to stay away from them.

To start this diet, we are meeting with a dietitian on January 6 to set up a plan. After that, Ruby will be admitted into DeVos Children's hospital for anywhere from 3-5 days to start the diet. It is very strict and it has to start with some kind of fast so they need to watch Ruby to see how she reacts to everything. If all goes well in the hospital, then we will be sent home with special formula and a specific regiment of what she needs to eat. I was told to buy a gram scale that measures in tenths of grams to we can measure everything she eats exactly.

I don't know a lot more than that, but we will be getting more info from the doctor about the diet and when our hospital stay will be. We meet with the neurologist next week so then he can clear up any questions we might have.

I am not excited about the hospital stay, but I am hopeful that this diet will be effective. I am so ready to try something else because it seems like we haven't made a lot of headway with all these meds. I am really hoping we can even wean Ruby off at least one of the meds because when she is not so sedated her personality starts to come out and she is much more active.

So, with every new thing we try there is a lot of hope and some fear. Hope that this will finally stop Ruby's seizures, and fear that it won't and then we won't know what to do next. I am also a little worried about having her food be so regulated, especially when baby #2 comes around; she sometimes has a hard time eating her normal formula so I hope she will do okay having to eat exact amounts of food.

But, once again, God is asking us to trust Him. He is continuing to lead us down this crazy path and we just keep praying that He will give us the feet to be able to walk it. Please pray for peace and healing. Thanks.

EEG News

I talked to our nurse this morning and she said the EEG looks the same as the last one, which means they are still seeing seizures and we haven't made much headway in getting rid of them after 2 months of meds. This is very frustrating, but it is what we expected to hear since we have seen seizures all week. We had a rough weekend with Ruby. She seemed very tired and her muscle tone was poor. This affects her swallowing and sucking so eating was a big chore this weekend, although last night and this morning she ate a lot better. Usually when we increase her medication we have a few down days as her body adjusts so I am hoping that is why she was so out of sorts this weekend. It also could be because she is having a few more seizures too and her body is worn out from that. The seizures she has can cause major regression in development, so whenever she has a couple of bad days I get very worried that she is going backwards with development. She did have smiles for me this morning, which is always a blessing. We are hoping to hear back from her doctor yet today as far as where to go from here. I would like to try the steroid shots which are pretty severe, but I am so sick of going around in circles with all these meds and not getting anywhere that I am ready to take the next step.

On a more positive note, we were blessed to stay safe and warm during a nasty blizzard the last few days. We had some quality stuck in the house time, which was relaxing, but I am itching to get out again :) Today we have physical therapy and I am going to run a few errands; I have to go to the social security office to get Ruby a social security number for tax purposes. Tonight, we have a fondue party with Mark's work and my parents are babysitting, so I am looking forward to that.

Thanks again for all your prayers. I was frustrated this weekend, but this morning things are looking up again. I will keep you posted with what we hear from the doctor. Hope you all have a blessed holiday week!!

Nothing Yet

I called the doctor today at 3pm and the message said they closed the office early because of the snow storm. So, I still don't know anything about the EEG. Hopefully Monday we will hear something.

Have a great weekend!

No News Yet

The Smiling Picture I Promised :)



We had Ruby's EEG this morning and again she did great; she slept through most of the test which makes the whole thing a lot easier. I called our neurologist at 4 this afternoon and he hadn't been able to look at the EEG yet, so we will hopefully hear something tomorrow. I am not very hopeful that the EEG will look good though because we have seen an increase in seizure activity in the last couple of days. The doctor did increase one more of her meds yesterday because of this, but so far it hasn't helped. I am really ready to take the next step because none of these meds seem to be working. There is a diet we can try that some kids have had success on or there are the steroid shots that can have nasty side effects, but also seem to have a 60% chance or so of getting rid of the seizures. We will wait and see what the doc says tomorrow. Thanks for contining to pray.

There is not a lot of new information to post. Ruby is still having seizures everyday, even though we increased her steroids on Saturday. The seizures are very short, but we still see them. I don't think we will change anything until the doctor sees her next EEG, which we have on Thursday morning. If that doesn't show improvement, then we may have to try something else-- maybe the steroid shots. I am really sick of trying med after med after med because as soon as her body gets used to one, then we switch things on her. This affects her sleeping and eating and it is hard to figure out a good routine for her when we keep changing things. On the other hand though, I want to find a combo of meds that completely stops the seizures, so I know this is for the best.

On a positive note, Ruby seems to continue to make small developmental improvements. She is still smiling (I have a great picture to post soon :) and she is holding some of her own weight when I stand her up on her feet. She still doesn't like tummy time, but she can tolerate it a little better and she sometimes pushes up on her arms enough to tip herself over. A physical therapist and a occupational therapist from Early On came over yesterday to evaluate her and see what kind of services she qualifies for. They were great and I think they can really help Ruby. I am hoping that one of them will be able to come once a week. It is so nice that they do home visits because when baby #2 comes around it is going to be hard to get out of the house :)It is also nice to have people teaching me what I can do to help Ruby the most.

We are thanking God that Ruby is smiling and making some small gains, but we would appreciate it if you could continue to pray that God would stop these seizures totally! We know He can and we know prayer is powerful. Please ask Him for a great EEG on Thursday and no more seizures!! We appreciate all of you!

A Giggle???

Ruby was so close to giggling this morning. I think I heard one possible little giggle-- either way the smiles are great!!

Here are a few pictures:




29 Weeks Pregnant!


Ruby at physical therapy-- she loves this giant "swing"


Giggles?

Pictures and the Neurologist

We met with our neurologist this morning and he sounded encouraged that Ruby was making some developmental progress. The seizures or spasms aren't gone, but we are hoping that by continuing the meds they will slow down even more. We are going to stay on the steroids at this dosage until Friday and if the seizures haven't stopped by then we will increase the dose. Then next week we have another EEG to monitor Ruby's progress. If the EEG shows no improvement we will talk about doing steroid shots, but for now we are going to stay with the oral steroids and the other seizure meds. Ruby has had a good couple of days. She has been sleeping pretty good and she seems stronger then she did a month ago. I hadn't seen a smile since Friday because she started her steroids on Saturday morning, but then last night I saw a smile again. Every time we give her new meds it seems to take a few days for her body to get used to it and then she comes out of her fog a little more. We are feeling okay about where we are at. Of course, we would love to have the seizures gone, but we are thankful that Ruby is tolerating the meds and is content. It is also fun to watch her make progress, even if it is very slow.

Here are a few pictures from the last couple of weeks:

Ruby with her Great Grandpa and Grandma VanEssen in South Dakota






Grandma TenHaken


Great Grandma Schonewill


4 Generations with Ruby, Dad, Grandma TenHaken and Great Grandma Douma


Ruby and Mom


The TenHaken Cousins


Mark and his brothers and Dad


Ruby and her newest cousin, Max


Is that a smile??


Ruby is practicing sitting up. We put the magazine behind her head for some extra support :)

Quick Update

Sorry again for the lull in posts this week....

Ruby's doctor decided to start her on oral steroids this weekend, so we started that on Saturday morning. This is on top of all her other meds. So far we haven't seen them make any difference, but I have no idea how long they are supposed to be in her system before they affect her. Thankfully they don't seem to be bothering her; she has still been sleeping and has stayed fairly content. We will touch base with the neurologist tomorrow and then we see him on Wednesday. If these steroids don't work, I think the next step will be a daily steroid shot, which could have nasty side effects. We don't want to go there, but at this point I am willing to do just about anything to get rid of these seizures. We will see what he has to say this week.

By the way, our other baby seems to be doing well. I reached 28 weeks yesterday, so we are into the third trimester. It is crazy to think that in less than 3 months we will have 2 babies! I have a doctor's appointment tomorrow, but from what I can tell everything seems to be going good on the pregnancy front :)

I will try to post some pictures soon. As always, thanks for your prayers.

Trust

My heart is disappointed this afternoon. Ruby had her EEG this morning, and the nurse from our neurologist's office just called to tell us that the on call doctor read the EEG. He still sees definite seizure patterns; he even saw 3-4 "spasm" patterns while she was taking the EEG. This means she is having little seizures and I am not even seeing them. I am so discouraged because we had such a good week with her. I really thought the EEG was going to be much better. Our doctor is on vacation, so the on call doc didn't compare all three of Ruby's EEGs, he just read the most recent one. So, I guess this one could be a little better than the last two, but unfortunately, seizures are still happening. The nurse did say that it is encouraging Ruby is making developmental gains, but that we are not out of the woods yet. Our doctor gets back on Monday and the nurse was going to talk to him to find out what the next step will be. She said he would probably "get creative" with meds, since Ruby is already on the highest dosage of two of the meds she is on. I am guessing steroids will be a part of the next round of treatment, but we will see.

I am tired of meds, doctors, EEGs, MRIs, seizures and therapy... yet I know this is what my baby needs to heal and I know we are probably just at the beginning of most of this. I long to have our Ruby healthy and I feel so bad that she has to go through all of this. Sometimes I struggle with fact that if Ruby had been in our arms sooner, maybe a lot of this could have been prevented; other days I am so thankful that God allowed us to take her home when we did because I really believe she would not have survived if she had stayed where she was. Wow- what a roller coaster of emotions.

Even though I have some anger and grief, I keep coming back to this verse from Proverbs that gives me hope:

"Trust in the Lord, with all your heart and lean not on your own understanding. In all your ways, acknowledge Him and He will make your paths straight"

As much as I don't understand what God is doing, I know He is in control. It is so hard to trust Him in tough times, yet I find myself having no where else to turn and then it is a blessing that I do have Him to hold on to.

Thanks for your prayers; some days it is hard for me to pray so it is a blessing to know there are people out there saying prayers for us and for Ruby. We continue to covet those prayers.

We're Home

After a week in MN/IA/SD, we are home. We had a great time seeing family and friends and it was a joy to introduce them to Ruby, most of them for the first time. We ate a lot, played games, shopped, visited, watched football, held babies... a quality family week.

Ruby had a great week developmentally. She smiled quite a bit (especially for Grandma TenHaken :), she had longer periods of time on her tummy, she started kicking her legs a little more and she started pushing up on her arms a little when she was on her tummy. A couple of times she pushed up enough to tip herself over. She also seemed to have a little more awake time which is fun to see. When she sleeps all the time I don't feel like I get to see her personality and it is hard to work with her on physical therapy type things.

She is still struggling with a little cold. Vick's for babies, saline solution and the vaporizer seem to help. She did have at least one seizure in the last week (maybe two-I am not sure if what I saw on Saturday was one or not). That is disappointing to see, but we are thankful she is making small gains with her development. She has an EEG on Wed. and that will tell us a lot. Hopefully the EEG has improved again. If it hasn't shown improvement or if it has gotten worse, then we may have to try yet another med so we are hoping that is not the case.

Thanks for your prayers. We are worried about Ruby's health and development, but we have felt God's peace through this journey. It is a blessing to be surrounded by family and friends who love Ruby for who she is. We are confident that God is faithful and we keeping praying that He will continue to help Ruby's brain heal and help her to develop.

Vacation

Sorry for the lack of posts. I forgot to mention that we are in the midwest this week, visiting family for Thanksgiving. Mark's family lives in MN so we will be there for most of the week. We were also able to visit with all of our grandparents Sunday and yesterday, so Ruby met all her great-grandparents for the first time. So far we are having a great time catching up with family and introducing Ruby to a lot of people. She meet her cousins on Mark's side for the first time yesterday; they were great with her and they loved to hold her and help me feed her, change her...etc. It was pretty cute.

Ruby has not had another seizure since we increased the meds on Friday again; we are praying they will not come back this time. She does have a nasty cold still which makes sleeping at night and eating a little tough; hopefully that will pass soon.

I probably won't post much this week, but I will update the blog with new pictures of our trip when we get back. Have a blessed Thanksgiving!

Pictures

So Ruby has had one seizure each of the last three days. She does have a cold so maybe that is triggering them, but to be safe, the doctor increased her dosage of the Vigabatrin one more time. I thought we were already at the max dosage, but we are going to push it up once more. Again, we hope this stops them completely. I am a litle worried about her cold too, just because she has had pneumonia a couple of times in Ethiopia; I do not want this cold to settle in her lungs so we are watching her carefully. She has not thrown up since Monday so that is a blessing. She is also eating pretty well and she gained weight again so we are encouraged by that.


A few pictures from the last couple of weeks:

Tired out from tummy time.


Ruby is not a big fan of cereal.


Tiger loves to sleep by Ruby on the couch.




Ruby at her MRI.


Ruby getting an EEG.

A Decent Day

We had a decent day, despite the cold Ruby has. Unfortunately we did see one small seizure today so that is discouraging, but we are hopeful that it doesn't mean much. She did smile a couple of times again today so that helps. It also seems her stomach issues are under control; the doctor put her back on her normal formula and gave her meds for her stomach. I am not pumped about giving her something else, but if it helps to calm her stomach down then it will be worth it.

Thanks for your prayers.

Prayer Request

Please pray that Ruby will keep her food down. She threw up Friday night, twice on Saturday and then again tonight. It is so crucial that she keeps her medicine and food down. We are feeding her high calorie formula because she is so small and we need her to gain weight. This is hard to do if she keeps throwing up. I am not sure if she is just sick or if she is throwing up for other reasons such has the new formula or the meds... hard to know. We would appreciate your prayers for this! Thanks!

The Weekend

We are very thankful for a fairly good weekend with Ruby. Unfortunately she caught some sort of bug because she threw up a couple of times on Saturday, but after several loads of laundry and three baths, today she seems much better. Even though she was sick, we are praising God that we haven't seen any full seizures since Tuesday!! We are still seeing some fragment seizures, which just means she does a weird face now and then or her eyes will look funny for a minute, but nothing like we saw a week ago. Also, we saw real smiles this weekend and Ruby seems to be more alert and awake. We are really hoping we are starting to see glimpses of her personality now that she is used to the meds. She is still on the highest dose of two of the meds to get rid of all the fragments, but we are very encouraged that we are seeing some developmental progress.

It was a nice, relaxed weekend with the three of us. Mark is a fantastic husband and he took care of Ruby Friday and Saturday night so I got two solid nights of sleep. That felt so great! We are feeling more at peace about everything; Ruby is definitely not "cured" or out of the woods, but she is relaxed, happy and making small steps in the right direction, so we are thankful.

A Little Progress

We have had a week filled with appointments: an EEG, a consult with the neurologist, a video feeding study, a pediatric development evaluation... but, all in all, it has been a good week. Thankfully, Ruby has not had a "full" seizure since Tuesday, and even that was a small one. We have seen the start of several seizures, but then they stop without turning into seizures. We are so hopeful this means the episodes are over, although we know that in some cases of infantile spasms they come back. Last night we increased the Vigabatrin (the 3rd med) to try to get rid of any fracture of seizure activity that might be left. This has left Ruby extremely tired and I think it upset her stomach a little because tonight she threw up all over the place. Other than that 20 minutes though, she has been very content when she is awake.

I am also very excited because tonight, for the first time ever, Ruby reached out and grabbed on to a toy!! I know this doesn't seem like a big deal, but I have been trying for weeks to get her to hold on to a toy and tonight she actually seemed interested and she grabbed on to one! We are also hearing Ruby "coo" and make other noises a lot more; it has been so much fun to hear her make contented sounds! The doctor told us that any progress, however slow it may be, is a good sign, so we are going to celebrate these little signs of growth.

We continue to pray that Ruby's seizures are completely gone for good and that she keeps making progress in her development. We are also praying that her EEG in a few weeks shows more normal brain patterns to prove that the meds are working.

Thank God for a great day with Ruby and for signs of progress!

Good and Bad News

Everything went fairly well today at our appointments. First we had another EEG done and then we met with the neurologist to discuss the MRI, EEG and Ruby's medicines.

The bad news first-- We were praying for a clear MRI, but unfortunately the doctor saw some scarring in the white matter in Ruby's brain. This could have been caused by an infection she had earlier or a lack of oxygen she experienced. We are thinking this damage probably happened when she was really sick in Ethiopia in August. This is frustrating for me because if she had been in the States by then a lot of this could have been prevented. He also saw signs that at one time Ruby had bleeding on her brain that could have been caused by some kind of trauma or infection also. He wasn't too worried about this as he said the spots were small and usually the brain can absorb this.

The good news-- Ruby's EEG looked better this time. The doctor said he didn't see as many spasm/seizure patterns and her brain waves are looking a little more normal. We have not seen as much seizure activity since we started the 3rd med so this is why the EEG is calming down.

Where do we go from here-- Really none of what we found out today changes Ruby's prognosis a lot. Because of the scarring on Ruby's brain, we know she will have some type of delays, but we have no idea how severe they will be. Already she is several months behind developmentally; some of this could be due to time in the hospital and orphanage, but some of it is also probably due to her brain injury. Kids that have infantile spasms fall anywhere on a spectrum from only having small delays to being severely handicapped.

We are increasing the dosage of the 3rd med tomorrow; since is seems to be working we are going to try to totally get rid of the seizures. In 2 weeks we go back for another EEG to see if Ruby's brainwaves have calmed down even more. Once she is seizure free and she has a couple good EEGs then we can talk about weaning Ruby off some of the medication. She will probably have to stay on some meds for at least 6 months, maybe longer. In 4 weeks we will go back to the neurologist for a consult; hopefully the seizures have completely stopped by then.

Mark and I are doing fairly well. We were angry, frustrated and sad at first and those emotions still come and go, but we are now coming to grips with what we are dealing with. We are also trying to focus on the positive and keep hoping that Ruby will continue to make improvements in her development.

Thanks again for your prayers. I think we will continue to need them, but we have felt God's peace through this journey.

6 Months Old

Ruby is 6 months old today! This is bittersweet for me. I am glad she is growing and gaining weight, but it reminds me that she has a ways to go developmentally. Hopefully, once the seizures stop she will catch up faster. It is positive that we haven't seen her regress during the last couple of weeks. We keep working with her as much as we can and we hope to see progress.

Only one full seizure today, so that is better than last week. I saw her face look like she was going to go into a seizure several times today, but then it didn't. Tomorrow we are going to Ruby's pediatrician and unfortunately she has to get her 6 month immunizations. I am sick of watching her get poked, but I guess it is for the best. She is sleeping peacefully right now. She has been much more content lately; I am not sure if that is from the meds or what, but it is a blessing for me.

We are still hoping for a great report from the neurologist on Wednesday when he looks at Ruby's 2nd EEG and reads her MRI. Thanks for your prayers!

On a happier note, I am an aunt again! Mark's brother Paul and sister in law Jill had a baby boy yesterday. His name is Max Joseph TenHaken. They live in South Dakota so we will meet him over Thanksgiving. Congrats Paul and Jill!

A Glimmer of Hope??

After the MRI Ruby was very sedated and out of it for a full 24 hours. She didn't have much seizure activity during this time, but that was probably because she was so sedated. In the last 36 hours she has only had a couple small blurbs of seizure activity; this is much improved since last week Wednesday and Thursday. We are being cautiously hopeful at this time that the Vigabatrin (the 3rd drug she is on) is kicking in and slowing down her seizure activity. Yet, we know it is early to be able to tell for sure if the medicine is working, or if she just had a calmer day. So, we wait, and watch and continue to pray. She is still very sleepy, but she seems much more content then she did Friday and Saturday morning. I don't think she is as uncomfortable as she was at first when we added the new meds so that is good.

We appreciate all of your prayers. Please keep praying that the seizures stop completely and that her EEG shows signs of healing in her brain.

MRI

Ruby's MRI went well this morning. We were worried she would have a hard time with it because she couldn't have any formula after 2:15am and the MRI wasn't until 9:45. Because of the seizure meds she is on, she was so tired that being hungry didn't seem to bother her. The doctor sedated her orally and she fell right asleep. As she was waking up they drew blood so we wouldn't have to go back to a lab and have her poked again. Last week they couldn't find a vein so this week they used an artery to draw blood which worked much better. We won't get results from the MRI until next week, but we are thankful it is over for now. It is almost 5pm on Friday and Ruby has been sleeping basically since 10:00am. She did wake up for 20 minutes to drink 2 ounces of formula, but else she has been out; all this medicine is really knocking her out.

We started Ruby on a 3rd medicine last night and we are really hoping to see results from this. This med can only be purchased in Canada and we weren't going to be able to get it until next week because they had to ship it to us. It was important to us that Ruby start this med ASAP so we didn't have to go all weekend without it. We considered driving to Ontario, but thankfully, someone from Mark's work was in Detroit and just hopped across the border for us to pick up the medicine. That was a huge blessing!

Next Wednesday we meet with the neurologist again after Ruby's 2nd EEG. At this appointment the doctor will be able to show us the MRI, and discuss Ruby's EEG and current meds. Hopefully by then he sees a huge improvement in the brainwaves on her EEG.

Thanks again for all of your prayers. We are hoping for a great, seizure free weekend! We will keep you posted.

Disheartened

Ruby had a rough day again; today she had the longest seizure yet, even though the doctor increased her meds Monday night. This is very disheartening; the longer the seizures go on, the more damage may be done to her brain. We added another pill to the mix tonight and the doc is ordering yet another med from Canada to start in a few days. He was pretty concerned to hear that her seizures were not getting any better. Ruby is very sleepy from the medicine; when she is awake she is fussy because the pills make her stomach hurt. I love Ruby from the bottom of my heart but it is hard for me to really enjoy her right now because she isn't awake much and when she is awake she isn't very content. I don't really know her personality yet because so much of what we have experienced has been while she was sick. We are very frustrated and having a hard time swallowing the fact that this might be reality for us for awhile. We are desperately hoping that these next meds work very soon. If they don't work, our next step would be steroid shots that can have nasty side effects. Please pray!

Meds

Ruby had a couple more seizures today; we were really hoping we wouldn't see any by this time. The doctor is increasing Ruby's dosage until Thursday. If we don't see the seizures stop by then, we will have to try another drug; we can't increase the dosage of her current meds anymore because of her weight. The next drug we can try is only available in Canada so there are some hoops to jump through to get it and to have some of it covered by insurance.

I have to admit that I am disappointed we have not seen more improvement by now. Please pray that the seizures stop in the next couple of days. It's hard to watch them keep happening, knowing that it means something crazy is going on in her brain.

Thanks for your prayers.

Doing Okay

Ruby had a fairly good weekend. We have seen a couple of seizures, but not not as many as we saw Wed-Fri so that is a good sign that the medicine she is taking is kicking in. We have to call the neurologist tomorrow and I am guessing he will up her dosage to try to stop the seizures all together. We also have an MRI and EEG probably this week to see how her brain is responding.

Unfortunately, the meds taste horrible and they make Ruby a little nauseous, so that makes feeding pretty hard. She doesn't seem that hungry and she is fussy so I am guessing her stomach is bothering her. She is also very sleepy so that makes it hard to do the physical therapy type things that we need to do with her to keep her developing.

We are doing okay. We are trying very hard not to think worst case scenario right now, although that is hard. It is also tough to think of our next several months being filled with MRIs, blood draws, EEGs, and doctor's appointments, but of course, if this is what it takes to get Ruby better then we will do what we need to do.

If you could join us in praying that these meds she is on now totally stop the seizures soon and that the next EEG shows signs of huge improvements in Ruby's brainwaves we would appreciate it.

Thanks for the support.

A Rough Couple of Days

We have had a rough couple of days at the TenHaken house. Over the last week or so, we have noticed that Ruby has a weird facial spasm going on. We started watching it, not sure if we should be concerned or not. On Wednesday, these spasms started to worsen and she had 8-9 episodes of these spasms that each last for 3-5 minutes. I called the pediatric development nurse at DeVos Children's Hospital that we have been in communication with. She got us scheduled with an EEG the next morning so we could see what was going on in Ruby's brain. Thursday we were at DeVos for the EEG, which took a couple of hours. This morning we went back to Grand Rapids to consult with the neurologist after he had read the EEG results. Unfortunately, the EEG showed him that Ruby has a form on epilepsy called "infantile spasms". The affects of this condition vary greatly. If it goes untreated, or if patients don't respond to treatment, it can be very devastating by leaving the person mentally and physically handicapped. To try and prevent it from getting bad, the doctor is starting Ruby on high doses of medication this weekend. If this medicine works, we should see less seizures over the weekend. If after a week or so we don't see any change, then we will change meds and try something else. If we can stop the seizures soon, then Ruby's prognosis is much better.

The doctor wants to do multiple EEGs to monitor Ruby's progress. Next week we have another EEG and an MRI scheduled. We were at DeVos today for several hours trying to get an MRI, but unfortunately, the nurses couldn't get an IV started to sedate Ruby. They tried every vein, some of them several times, before they gave up. It was torture watching her scream for almost an hour while they tried; I had to leave the room, but Mark was great and stayed with her. So, since by then it was so late in the day, we had to reschedule the MRI for next week and then they will use oral sedation instead of IV.

So, it was a very long, emotional day for us. Ruby is very tired and I think she will sleep good tonight. We gave her the first dose of meds tonight and we will do more tomorrow. We are praying hard that this first round of meds works. We will know a little bit more after the weekend when we assess her progress with the doctor.

We would really appreciate your prayers again. The last 6 weeks have been a crazy emotional journey, but this has by far been the toughest couple of days. We are trying to think about the positive instead of letting our minds wander, but that is tough. We will keep you updated.

Thanks and a Few Pictures

Thanks to all of you who left comments on my last entry. I really appreciate your advice and encouragement. I think often I just have to relax and let Ruby be Ruby. I don't always need to figure everything out. I think I get overwhelmed when we have all these appointments with physical therapy, occupational therapy, chiropracter, DeVos...etc to try to figure out what is wrong with Ruby when really there could be nothing "wrong" with her at all. She has made such incredible progress this last month and I think so many of the things we are seeing will fade away after months of good nutrition and love.

It has been a little over five weeks since we brought her home. Here are a few pictures to compare.

This is when she just got out of the hospital in August.


This is when we met her in the hospital in September.




This is her now. Check out that open hand!

Update on Ruby- Need your advice!

I thought it was time that I update you on how Ruby is doing and ask for your advice. I am going to share some joys we have experienced, but I also want to be honest about issues we are facing.

Ruby is 5 1/2 months old and she has been home from a little more than a month. We have seen her grow (3.5 + lbs since we have been home!) and change a lot already and we are excited to watch her make progress. She was very sick in Ethiopia and was in the hospital there a couple of times with pneumonia and other various things. Now we are taking her to physical therapy 2 times a week to work on her muscle tone and development. Her hands used to be very clenched, but they are much more relaxed now. She is starting to kick her legs more and she can bear a little weight on them. Tummy time has been more tolerable and we have caught her sucking on her fingers a few times. I think we have seem a couple of smiles, though we would love more. She loves bathtime and she loves to cuddle with me and with Mark. We are working on getting her to grab at toys and hold on to them; she can hold a rattle if we put it in her hands, but she doesn't usually reach out to grab at it. She looks around a lot, as if she is always taking everything in.

There, as you see above, are many positve things going on, but we still have some concerns. Ruby is very clingly lately and will often scream when I set her down. This could be a positive sign of attachment, but I am not sure. She is sleeping with us because that is the only way I can get her to sleep; she seems much more comfortable right next to us.Often she wants to hold my hand as she falls asleep. I have also noticed that she dazes a lot. I can get her to focus on me and she will track rattles, but sometimes it seems like she is zoning out. Could this be a way she is coping to all the new stuff around her? Could she be overstimulated? She also has some meltdowns where she screams and sweats (I didn't know infants could sweat this much :) I wonder if this is because she is scared?? She also still arches her back some, although that has gotten significantly better since we were in Ethiopia. We have no idea if the arching is just because she has poor muscle tone, reflex, a defense mechanism, or something else. We are in contact with a neuro-development specialist at DeVos that we saw when she stayed at DeVos overnight. I think they would like to see Ruby in the next couple of weeks to see how she is doing. I drive myself crazy watching Ruby and trying to decide what is emotional, what is developmental and what could be signs of a medical issue.... I love her so much, but I am tired from trying to figure this all out.

So- I was wondering if I could get some feedback from all of you who have adopted infants or who have read about adopting infants. Did you have similar concerns? What should I be looking for? I knew there would be developmental delays, but I underestimated how many emotions she would be experiencing. Even though she is young, I think she is grieving and scared sometime; other times I think she is making great strides towards attaching to us.

I would love your feedback! Thanks, you all have been an encouragement to us.

A Few Random Things and Part of Day 7 in Ethiopia

I know, I know, it's been awhile again-- sorry about that. It is amazing how much time a 5 month old can take up! We are loving it, it just means that I haven't been as "blog happy" as I was a couple of months ago :)

Day 7 in Ethiopia- On Wednesday we were able to go to the Bethany transitional home and the orphange where Ruby lived for 4 months. The transitional house is where the children who have been referred to Bethany families stay until their adoptive parents can come. Ruby was only here for 1 night because the house was new for Bethany and then she got sick again and was put back in the hospital. While we were here we got the pleasure of meeting 4 beautiful baby boys that we referred to Bethany families. Please pray for these families because since we have been there two of the boys have gone to heaven and the two other boys are still sick, but doing better. This has been a heartbreaking situation for these families. It is so sad to see babies dying of things like diarrhea because of the lack of health care and resources they have in Ethiopia. We are praying for these families and thanking God that He allowed us to bring Ruby home when He did. I don't know if she could have survived another round of sickness. That is a very sobering thought. Again, please keep these families and Bethany in your prayers during this tough time. Here is a link to my friend Holly's blog-- she just posted some more specifics about this situation if you want to check it out.
Here are some pictures of the transitional home. I purposely left out any pictures of the other children, in respect to those families. The crib you see is where Ruby was for 1 night before she went back to the hospital.







On another day I will post about our trip to the orphanage where Ruby was.

A few random pictures from the last couple weeks. Mainly, I wanted to post pictures from when Mark's parents were here. We had a great time with them; they were very excited to meet Ruby and that was fun. We went to Crane's apple orchard one day with them; you will see that in the pictures.

My niece Arabella loving on Ruby-



Celebrating my brother, Kyle's birthday. This is him with his girlfriend Annika; we all went to Pizza Ranch, a favorite family spot.

A Ruby Yawn

Day 6

Our embassy appointment was on day 6 (Tuesday). We left for the embassy by 7:30am because we were worried about traffic. The streets were busy and we spent most of the drive just looking out the window and soaking it all in.

The U.S. Embassy was a very plain building (see posts on day 5). No cameras were allowed inside, but I did get a picture of the entrance. We had to go through a couple different metal detectors and security personal to get into the embassy. They made us check our electronics (cameras and cell phones); they stored them until we were ready to leave. Next we walked down a hallway, then went outside to walk to another building next door. Here we went up a long flight of stairs and stood in line by a window. We got paperwork to fill out from this window and once we had filled it out correctly (it took us 3 tries :) we then waited in a waiting room until our name was called. The waiting room was quite full and we were the only white people so we stood out quite a bit. After about 30 minutes of waiting they called our name and we stepped up to another window where an American asked a few questions about our adoption. The whole interview lasted 2 minutes and then he signed our papers and said we were good to go. I expected to be interrogated :) so it was a relief that it went so quickly and smoothly. He said we could come back on Thursday morning to pick up Ruby's visa packet.

After the embassy we drove back to the hotel and took a nap. Later that afternoon we brought Ruby back to the hospital for more antibiotic shots (we had to do this twice everyday) and then we relaxed at the hotel for the rest of the night. We had quite a bit of down time, but we didn't mind because Ruby was still not feeling great. We didn't want to drag her around the city. We were very excited just to feed her, hold her, change her, rock to sleep...etc.

I don't have anymore pictures from the embassy, but here are some recent pictures of Ruby. She is doing great! Everyday we see her growing and changing. She has gained almost 3.5 lbs since we brought her home about 4 weeks ago!





Tummy Time


Our first go at feeding Ruby cereal

It's A Boy!

Ruby will have a little brother-- that's right, TenHaken baby #2 is a boy! The ultrasound went great today; everything looked good. The baby is measuring a tad bigger than our due date, but the doctor said it wasn't enough to change the due date, so we will stick with February 28. We are excited about having a boy and we feel blessed that he seems healthy. God is good.

20 Weeks

Today marks the halfway point of my pregnancy! The last couple months have flown by and I am thinking the second half will go just as fast. I have been feeling great which is such a blessing; I am tired, but that is probably just from getting up several times every night with Ruby. I am feeling a little overwhelmed about having two kids so close together, but I know it will work out. We have an ultrasound on Monday at 4 so hopefully we will be able to find out the gender of baby #2. I am sure seeing the ultrasound will help the pregnancy become more real. We are very excited to find out more about this baby!

Here is a prego picture-- this was actually taken last week, but it will work.