6 Months .. what a ride

6 Months ago, I walked out of the International terminal at Chicago O’hare , and into a completely different life. I was greeted by the most supportive group of friends and family that I could ever have hoped for or imagined. There are some days when it feels like we have been home for 6 years and other days 6 months have felt more like 6 minutes. There have been a LOT of ups and also a lot of downs along this road that we have walked but all in all it has been a crazy awesome 6 months.  I have learned that what I used to think was busy now seems like a slow down, and that sleep is truly over rated. I have come to realize that there are NO words good enough to describe the amount of gratitude, love, and appreciation I have for the friends and family who have been on this journey with us.

It had been almost 5 months since my last blog and that should let you know JUST how busy we have been.  The majority of our summer was spent at Easter Seals getting Lola hooked into an incredible network of supports and therapies. Lola started in physical, occupational, and feeding therapies at the beginning of the summer and they have made an incredible difference in our lives. The child who came home 6 months ago is far from the child we are learning more and more about every day.  SO… it is about time for a catch up.. because 6 months has been a world of difference in SO many ways!!!

 

In the beginning of July Lola and I were blessed with a whirlwind weekend visit from her Aunties. 7 of my roommates from when I lived in Africa the 2^nd time flew into Chicago from 7 different states/countries for a visit. This visit couldn’t have come at a better time because I was having an extremely difficult time handling our new life. The best part about our group is that we have so much fun and it’s like no time passed since we were last together. We pretty much laugh from the time we get off the plane until we get back on them. We did a one day tour of Chicago’s more popular tourist attractions which was awesome but the best part was just being together.  Lola was spoiled rotten and the visit was just plain old good for the soul for both of us.  Lola got presents from her amazing aunties and decided really quickly that life is good!

 

After her Aunties left we spent a lot of time at therapy, but we also spent as much time trying to expose Lola to a life she had missed laying in a crib on her back. We went to the park, the zoo, and on LOTS of walks. We walked a fine line of exposing her to a variety of new things, and overwhelming her with too much and too many people all at once.  It is a fine line and we danced that line daily.

In the beginning of August, Auntie Brooke came to visit for a week. She came to therapy with us, played, and gave a lot of lovin to Lola. It was another MUCH needed visit as anxiety began to rise about going back to work and Lola starting school.

 

We were praying and praying for a spot to open at the preschool program at Easter Seals. After Lola’s evaluation at the preschool program in my school district and looking at her needs vs. what the programs offered, I made the decision that sending her to Easter Seals would be a better choice.  However, we didn’t know until a week before school was going to start, that she would have a spot. Talk about anxiety. When the phone call came through that she would have a spot in the Lily Garden Preschool, there were many tears of joy! That decision turns out to have been the best one since being home because Lola is blossoming … no pun intended! Haha Lola goes to school every day and absolutely loves it. She enjoys being with her friends and has learned a ton of new things. Her therapists come down to the preschool classroom, take her to do her therapy, and then bring her back. It is so cute because when she comes back all of her friends want to know where she was and they want to play with her. They show her books and toys and let her choose what they will play. They understand that she communicates with her eyes and they have NO problem letting the teachers know what she wants.

 

Lola's classroom



The star of the week is Lola's best friend

Therapy has made an unbelievable and visible difference in our lives. Her ability to eat without choking and manage different textures of food has had the largest impact on her daily life. She got a whole new level of motivation for eating when she started school. She actually gained a whole new motivation for everything once she started school. She LOVES to be with the kids and watch what they are doing. Her muscle tone and strength are improving daily. She wears braces on her hands and legs to stretch her muscles and they have made a huge difference. Her head control from the time we came home til now is extremely different and she has increased her stamina for sitting and standing as well. . There is no good way to adequately put into words the new level of appreciation that we feel for things that seem little or insignificant to others…  Such as sitting in a cart at the grocery store, or SITTING ON A BIKE!!!!

 

Most of all, she is developing a VERY strong opinion. She makes choices about everything in her life from her clothes, to her snacks, movies, and books. She may not have words at this point but she uses her eyes to communicate, and there is NO question as to what she thinks. For example, one day I showed her two outfits and asked which she would like to wear to school. Apparently neither were what she had in mind because she rolled her eyes, sighed loudly, and looked at the closet with a huge attitude!!! I looked at her and said you can’t have that big of an attitude, you don’t even talk yet!! AND then I walked over to the closet to get two more options. YES I know… she is going to be spoiled. However, after a few years of being neglected, I feel like she can’t REALLY be spoiled right?! Lola is very well known at Easter Seals for her clothes and hair bows, even by the janitor. WHICH all of you who know me are laughing because in a LOT of ways she has my personality, except for her very pink and girly sense of style! For my little fashionista, the more glitter the better!

In September, Lola participated in a Fashion show for Easter Seals. This is their yearly fundraiser and it was awesome! The theme was “What’s cookin at Easter Seals?” SO Lola of course could not disappoint.  Lola wore clothes from Re:New. WHICH if you don’t know about it, you should! It is an organization that works with Refugee women and helps to empower them by teaching them a trade, having them work while their kids are at school, and paying them to do it. This place is AWESOME! (http://www.renewproject.org/) She was a total poop because she would NOT smile for anything but she still stole the show because lets be serious… she’s adorable!

 

We were SO lucky to be able to have a visit from Ivan as well. Ivan is VERY important to Lola and my story because when I left Africa the first time, (before I was able to admit outloud what I knew in my heart about needing to adopt Lola) Ivan was the first friend I went to for help. The day I was leaving, all while sobbing like a baby, I made him promise to look after her while I was gone and make sure that she was ok.  He looked at me like I was crazy, and so for the three of us to be together in CHICAGO was surreal. He could not believe the difference in Lola since he had seen her the last time in Uganda.

 

Then came October and Lo celebrated her first fall and first Halloween. She was an adorable owl. AND while she did not quite understand the concept of what trick or treating is, or eat any candy, she thought Dressing up was hilarious. We went to a few houses with her friends Jake and Louie then off to Grandma and Grandpa’s to hang out with her cousins.  She also enjoyed her first taste of Grandma’s “witches brew,” or beef stew… a Sender Halloween Tradition. Lola’s adjustment to the cold has been entertaining to say the least. The first time our temp dipped into the 30’s was hilarious. I was getting some serious attitude and her facial expressions were priceless as I put her big winter jacket, mittens, and hat on. The look on her face I could hear her saying really mom… is this necessary! Please refer to the paragraph about strong opinions and communication with her eyes if you don’t believe me… but when we walked out the front door, she picked her head up off my shoulder and shot me a look that was communicating MUCH more clearly that she was wondering just what the heck was going on with the temperature! I got a very distinct “we’re not in Uganda anymore toto” vibe… BUT it was obvious she was NOT a fan! I just smiled and said oh honey.. we live in Chicago.. just wait for February, but one step at a time! Haha.

 

 

 

As we head into the holiday season, we are reminded of how lucky we are and everything just looks better and better. Lola is the most amazing gift and has blessed our family every day. Thank youyou’re your prayers and thoughts. They are appreciated more then you will ever know and your prayers are felt! That is an extremely brief update about our last 6 months. There are moments when our crazy life feels like a tornado but I wouldn’t change it for anything. We are SO grateful for the past 6 months of growth and look forward to seeing what the next 6 months has in store for us.

 

Lost

If you have been following our journey, you already know that we believe that this was God’s plan all along. The whole time that I thought I was “deciding” whether or not I could do this, if as a single mom I would be able to give Lola the life she deserves, I never felt a stronger connection to God. Every time I prayed for a sign, I got it. And when I tried to ignore the sign I got because I wasn’t sure I really wanted it, God sent a bigger one I couldn’t ignore so easily… i.e. THE CAR that almost ran me over with her name on the license place! All that time that I thought I was so in control of my life, I now realize that it was God leading me to give up the control and follow a new plan one that I certainly did not anticipate. When I arrived home with my beautiful little one, once again everything I thought and planned went out the window. I really didn’t know what to expect, but what we came home to was certainly not something I would have imagined. Scheduling doctor appointments, evaluations, and therapies became the top priority. I felt like all I did was make phone calls but we could never get anywhere. I was on the list to see people in july and august, and when you’re calling at the end of may that feels like forever away. I felt like we were stuck. All I wanted to do was get her on the road to healthier and happier. On top of all of the things I was doing to try and get help for the things she struggles with, we were also trying to figure out simple things like eating, sleeping, and pooping. ALL of which she ALSO struggled with. I felt like I was swirling around with no clue what I was doing. Sleep deprived and stressed. JUST like any new mom with a baby who you have to figure out. Except my baby was almost 4. SO not only was I trying to establish routines, I was also trying to build trust, battling to break old habits, and ease her anxiety of her previous life. The negative effect of institutional care on children is well documented and the effects can be devastating if they aren’t handled correctly. Once again another stressor for me because reactive attachment is a real thing and I was scared to death that she would develop it. She made some INCREDIBLE gains the first few weeks. She can now put her tongue down to eat and open her mouth to let me know she wants more, she is verbalizing more and more every day, she is smiling up a storm, she is reaching and gripping, and can now turn on 2 different toys on her own. These are AMAZING. However, when you’re SO sleep deprived and overwhelmed and in the moments everyday it isn’t until someone makes you step back that you realize all the progress that HAS happened. I was feeling incredibly overwhelmed after the hospital stay. I was frustrated and angry but trying really hard to be grateful. My last blog was about viewing the glass ½ full. WHICH is exactly what I was trying to do, and pretty much failing miserably… Friends and family members have been amazing and have called or wanted to visit but I was on total shut down. Lots of times I wouldn’t answer the phone because I couldn’t handle my life. Everyone talked about how huge of an adjustment it was for Lola but it was a huge adjustment for me too. I am someone who needs pretty scheduled sleep which any mom knows that is pretty well gone! I am also incredibly independent, which once again that is out the window because I have NO idea what I am doing. It is really hard for me to be vulnerable and ask for help, but I am pretty sure that is what God’s working on in me. All the time I was preparing to bring her home and going through the home study process, I was so sure in my heart that it was what I was supposed to be doing. I never had such a strong feeling about what I was doing before, and lets be serious if someone else was telling me what I experienced I would have probably thought they were crazy. I mean there were times where I thought I was crazy! I know that Lola’s mine. That I never questioned however, I did start to question why everything had to be SO HARD! I knew she had a disability going into this, and I have talked about if you asked me the adoption questions on the home study prior to meeting her, she is pretty much being everything I would have said no to. I couldn’t be a girl mom… I grew up with boys, I know sports and guns, not bows! I also thought it would be hard to be a mom of a child with special needs because doing it all day at work then going home to it would be tough too. However the feeling in my heart when I met her made all of that go away, and so I prayed and prayed, more then I have in my life and I felt like God was saying this is your plan, don’t worry I’ll help you. When we got home and got put in the hospital I thought I wouldn’t make it. It was the most I could handle. Or so I thought… When we were in the hospital, they did an EEG that showed a chance that Lola was having seizures. Up until that point I had not seen anything I thought was a seizure. The doctor wanted to do another test. A 48 hour EEG that would require Lola to wear head probes as well as be video taped for as much of that time frame as possible. Generally I’m a pretty confident person but this whole being a mom thing is totally new, and I was already overwhelmed so the thought of someone watching us from the outside for 48 hours was just another thing to raise my anxiety level. He was watching Lola at the same time as the machine was monitoring her brain so he could see if she was having spasms or seizures, but to me he was clearly watching to see if I was a good mom! Totally crazy… or sleep deprived.. but either way its what I thought. Here was my beautiful little one's look for 2 days!

Because not even a gauze head wrap and a box of wires can take away your sense of style when you're THIS cool!

SO cute but the wires got REAL old and when I then got the stomach FLU… it pushed me over the top. I had the flu for the entire time that we were being video and audio taped. AND then Lola got the flu! I was SO tired, and stressed, and literally at the end of my rope. I was SO mad because all that kept going through my head was the bible verse about how if you go with God’s plan he will make your path straight and we were so far from a straight path. To me, we were on the side of a rocky road with a freakin flat tire! I was so angry that I completely shut off, WHICH made things worse because Lola could sense it and her behavior changed too. We were a big hot mess. I was SO mad at God for not helping us out and making things easy. BUT then at the same time, I couldn’t be mad at God because God made no promises that hadn’t happened. I couldn’t see people because I should have been overjoyed at the new exciting life as a mom since everyone helped so much to get her here and the truth was that I was anything but over joyed. I loved my child more then anything in the world, but I hated my life at that moment and I didn’t know how to get out of that thought process. I felt totally lost because really since I was in Africa and everything was so messed up, I couldn’t feel God’s presence. I also wasn’t trying very hard to either. I wasn’t reading my devotion that has made SUCH a difference for me, there wasn’t time. I just found myself yelling and be pissed at God instead. Luckily for me that’s OK, he can take it. I had a LOT of changes and adjustments I had to get through. I was trying SO Hard to get over myself. I was listening to music that usually makes me feel better. I was trying to read the bible and teach Lola but everything just made me more and more mad. I am so blessed to have incredible friends/family I can turn to (when I let them) who were helping me work through where I was at and encouraging me. I’m learning to ask for help and accept help and to be ok with not being in control, which is extremely difficult for me. The flu was my breaking point, but yesterday was my turning point. I was extremely cranky and angry, once again, which is NOT who I am!!! Lola wanted to have a rockstar party and stay up late, but then also wanted to be up for the day at 4:15 AM. Needless to say this already tired mommy was not havin that! I took her down stairs and went back up to get myself together. I just couldn’t be angry anymore and I had to figure something out. SO I went to my devotion. It was exactly what I needed it to say, which I have found more often then not to be the case. It said “Rest with me a while. You have journeyed up a steep, rugged path in recent days. The wayahead is shrouded in uncertainty. Look neither behind you nor before you. Instead focus your attention on me, your constant companion. Trust that I will equip you fully for whatever awaits you on your journey... I am with you, watching over you where ever you go.” OK. Totally what I needed to read. I couldn’t make any promises but I could definitely try. SO I went downstairs with a new attitude and was met by the most amazing smile ever. For the first time since we had been home, Lola and I prayed together. We were going to easter seals for our first of a few evaluations and all along through all the dr. appointments and tests I just felt like if we could get to easter seals everything would get better. So we prayed for them to help her to be happier, healthier, and heavier. We were going to the feeding clinic so if anyone is going to help us get there, its them! When we got in the car I turned on the satellite radio station the message. It’s the Christian station that I listen to occasionally... when I need a little break from my friends Pitbull and Flo rida. ha They do something called a changing track where people call in with a song that has changed their life. AS we were pulling into Easter Seals, a changing track came on that I know was the reason I got that feeling to turn on that station. A man called in and shared his story. He was diagnosed with Cerebral Palsy and was told to expect being in a wheelchair for life, not probably going to be able to do much. BUT he wanted to be a doctor. SO he shared that he is a doctor with a limp but that his CP is a blessing and he has learned to accept blessings however they come. After he shared his story, they played his changing track. Which is now our changing track too… I was an absolute wreck when I pulled into the parking spot. I couldn’t get it together because the lyrics to this song are exactly what I needed to regroup. There is NO way that was a coincidence.

Glass ½ empty or ½ full

SO… this past week was a bit of a surprise, and many of you reading this will be surprised too. We spent last weekend and start of the week in the hospital. I didn’t tell most people that we were there because at first I thought it was just for 1 night so with everything up in the air and crazy it was completely overwhelming. I also felt like it was just something we had to get through and we would be fine. When I realized that it was going to be longer my focus was completely on Lola and I didn’t want to be missing peoples call or trying to call people back and explain everything that was happening... WHICH was a lot and that we had no answers. Anytime that something goes right, wrong, or different I think it is a test of character. I have always considered myself to be a glass half full kind of person. This week was certainly a test of that in many ways. Anytime you are going through a trial, people say God doesn’t give you anything you can’t handle. Once again that was definitely something I questioned this week. However the one thing I realized the most this week was the fact that I wasn’t alone and when I felt like I couldn’t make it anymore, someone would show up by the grace of God to support me or help me through JUST when I needed them. Coincidences?? I don’t think so. Now that it is over, I can just fill everyone in on what happened in a nut shell. Since we have been home from Africa, we have spent a lot of time lining up doctor appointments and specialists, finding out about therapies, and trying to get into some kind of routines. I started to notice that every afternoon Lola would spike a low grade temperature. I was in contact with the dr. about it and felt like we had a plan of action. We were going to watch it until Thursday of that week and if she still had them, I would let him know. SO on Thursday I emailed and we decided to watch it over the weekend because they were very low grade and if she still had them I would come in Monday. Saturday I called because I really thought I had come to the reason for them, I thought that she had a UTI. When I spoke to the dr. he said that because of the fevers he wanted us to go to the Urgent care. However, when Lola had labs done the first appointment, the nurse at Urgent care sent us to the emergency room because she couldn’t find a good vein and she didn’t want to just stick Lola to stick her, which I appreciated very much. When we got there the first time, I was SO relieved because the nurse that walked into the room, Sue, was someone that had lived on my block growing up. I went to school with her brother kindergarten through senior year of high school. I was SO glad to see her because I always loved her when I was a kid and it is much easier to watch someone you know and trust stick your kid then a total stranger.
SO even better, when we walked into the pediatric emergency room door this second time, who was walking towards us.. the same nurse!!! Thank you God for that because I knew that since Lola doesn’t pee on command, because what 3 year old does, that they were going to have to cath her. AND so I felt better that once again because it was Sue. We were in the ER for a while, and unfortunately for us the Urine culture came back fine. I say unfortunately because that would have been an easy fix, but then they started to do a bunch of tests, including looking for pneumonia, malaria, and her blood work to make sure her white blood cells were ok in case it could be something more serious, thinking a bacterial infection or even leukemia could be a reason. WHAT?! I came in for a Uti how the heck do we get there!!! SO when the dr. said they were going to admit us, it totally threw me off and talk about white blood cells freaked me out. Once again… here comes super nurse to talk me off a ledge. WHICH it is a good thing she did because when we got upstairs had she not I may have just punched the doctor.

Having a child that you know nothing about their birth history is hard. Every time you go to the doctor, a new school, etc., someone wants to know what her prenatal, birth history, and developmental milestones looked like. They also want to know what vaccines she has had. Sadly the “babies home” she was in, wasn’t a great place for her to be and we have no medical records at all prior to when I started sending money for therapy. I am certainly not ashamed that I don’t know the answers, many adoptive parents don’t have them. However as the mom, no matter how you are lucky enough to be one, you feel like you should know your child and you should be able to fix things. AND people try to tell you that’s not true, but you still feel like it is… Some people are better about asking for information then others and at 11:45 at night when I am still a little more then confused how we are being admitted, an attitude about my lack of knowledge did not go over well. BUT the nurse we had in the PICU was awesome and I totally loved her so that helped. NOT to mention that the idiots who designed it thought that it would be acceptable to put a toilet in a cabinet that pulls out rather then build an actual bathroom. ESPECIALLY because it was located AT THE DOOR!!! Not even on the inside wall! Are you kidding me… who wants to go the bathroom when you literally open up a CABINET and have to sit on a toilet that folds out, pretty much into the hallway. Totally ridiculous, but maybe the architect knew it was a great way to give people a laugh and when your child is in the PICU you need all the laughs you can get! SO that gave us plenty of entertainment talking about pulling the toilet out of the cabinet into the hallway to pee

The whole time from the nurse our first night til the day we left we had amazing doctors and nurses. When I was totally freakin out about being admitted Sue, the ER nurse, told me it was better because they could get to the bottom of everything. Little did I know how right she was because all of the specialists I had made appointments to see … pretty much in the fall… saw her while we were in patient. What I had to explain to the dr. our first night, was that specialists have appointments scheduled months out, and they don’t care that I just got off the plane and think my child is the most important… to them all their patients are SO obviously if the first appointment is July or august, you take it. BUT when you are in the hospital, they ALL come to you. Its like room service… only way better then the food they send up with the people in tuxedo’s. We saw the speech person who looked at her swallowing (which is good), the dietitian, the nutritionist, the social worker, the neurologist, the infectious disease guy, AND a regular old pediatrician. WE even saw the maintenance guy multiple times a day.. BUT that’s just because it was just Lola’s Grandpa swinging by on his way from fixing one thing to the next.

We spent a LOT of time just hanging out… monitoring her temp every 4 hours and waiting on test results WHICH made me want to poke my eye out because as far as I could tell we could do that at home as well! BUT they did have cable so I was pretty excited for a lifetime movie! Ha My friends Jess and Christy came to see me which helped pass the time and was VERY much appreciated. I also received a special delivery of an excellent dinner care of a family baptism that Lola and I were SO sad to be missing, which included a piece of my parents cake. Lola was able to experience Grandma and Grandpa's famous frosting. Mommy was nice and shared... a little.

While we were there we were able to meet with the neurologist who ordered an EEG and an MRI. He came up to meet Lola the day of the tests and I liked him immediately. He was great and Lola actually smiled for him. WHICH she does give away smiles sometimes, but at this point she was out of her routine, anxious, and over what she could handle. SO I took that smile as a huge plus. The EEG was no big deal because she just had to lay on the table and sleep. I was more worried about getting the glue out of her hair without rubbing bald spots then I was about the actual EEG test. The MRI on the other hand was a whole different story. They were going to sedate her, which scared me, AND she could not eat. For the sedation, they had to put in another IV. I was super stressed because since we had been home the only person who had been successful with getting a vein was Sue, SO just the thought of them poking her was raising my anxiety. I knew that she was working that day because she had mentioned it previously, so I immediately thought how about asking the nurse to just call her and have her come up. I sat on that idea for a few hours though because I really liked my nurse and I also didn’t want her to think that I was implying she wouldn’t do a fine job. SO the more they talked about the IV and the more my stomach hurt, I decided that I was just going to throw the idea out there. They could say no, Sue could be too busy, a lot of things could happen but if I didn’t ask I would never know. AND I am never really one to speak up for myself but in this case I did and thank God again it worked out. Up she came to put in the IV and of course did a perfect job (Lola doesn’t even have a mark or bruise by the way) When I saw her walk in the door, my stomach ache went away pretty much immediately. She was also able to put it in a place low enough that Lola could have a slight bend in her arm. Her muscles are really tight and when they had it in the elbow before they had her arm taped to a foam board to keep it straight, which she bent. SO the ability to bend her arm a little, I thought meant we might actually sleep. Which we didn’t, but that was better for the sleeping at her EEG so once again… Glass ½ full.

 

Our MRI time kept getting bumped back on Monday from the morning right after the EEG, to 1,2, and actually 3. When it hit 2, I made the decision to cancel because that was approaching over 20 hours with no food. AND that was absolutely not ok with my poor malnourished African with horrible acid reflux. The poor thing was miserable and so I was cancelling the test all together but they were able to reschedule for the next morning. By this point I was aproaching DONE! I wanted to go home. I knew Lola did too because she was really withdrawn. Prior to the hospital her personality was really starting to show and the longer we were in that one room, we were getting fewer smiles and less attempts to talk. SO  I knew we needed to GO . However we were supposed to be fever free for 24 hours prior to leaving, AND Lola needed to provide a stool sample for a culture the infectious disease dr. ordered. AND neither of those things were happening. Since we weren’t cleared to go Monday, Tuesday morning for her MRI seemed fine because there was still a chance we could leave Tuesday evening.

By Monday evening I was completely done. I couldn’t take it anymore being there and decided that we were leaving Tuesday regardless of what anyone else said about it. I mean lets be serious, I am a big talker so I wouldn’t have left but I thought really hard and got really mad thinking about  it, and felt better with my oppositional defiant self, thinking about how I was just going to take Lola and go! Tuesday morning, Lola woke me up with a bang I’ll tell you what. Stool culture here we come… They could have gotten it off her diaper, the sheets, me, the blankets. Really anywhere they wanted. It was horrible because we then had to strip her down, strip the bed and sponge bathe her. She was so cold she was shaking. AND because it was SO fun the first time, she decided to do it again, although the second time wasn’t as bad as the first! I was sick to my stomach thinking about the sedation, and sad that she was so upset. AND once again… who walks in the door, Sue of course! And if that wasn’t a great enough gift with perfect timing, she brought a present she had picked up for us, an owl key chain that is now a permanent part of our diaper bag.

My mom had to be at a meeting that morning, and my dad was wandering around doing his job so when they came to get us for her MRI, I would have been by myself. I was glad that there was a familiar face in the room with me. When we got down stairs my dad met us and was with me when they actually sedated her. My mom got there shortly after they took her in to the test. It was not as bad as I thought it would be actually. The doctor who was with her I liked a lot and I felt really comfortable with her watching Lola’s vitals. It was pretty funny because a nurse came to the waiting room with paperwork, took a look at us and made a very confused face and then walked away. She was probably confused because the only people there were white and the paperwork was for an African. We laughed about that one. When we got back to the room Lola slept for a very long time. My mom sent me to the cafeteria to pick lunch which was the first time I left her. It was really weird. I knew she would sleep, and if she woke up and saw my mom would be fine, but I wanted to be there! It was fine and I had about 2 hours to spare when I got back before she woke up.

In that time I met with the infectious disease dr. who said that basically we were waiting on labs and that we could do that and monitor her fevers at home as long as the neurologist so that it was fine for us to leave. SO we waited for her to wake up, and the neurologist to come talk to us. When we spoke to him, he confirmed the diagnosis of Quadriplegic Spastic Cerebral Palsy, which is what I was told from the dr. in Africa. It was kind of a bummer to have that confirmed because I was really hoping that a lot of her lack of movement was from 3 years of institutionalization and no intervention. That diagnosis means that the injury to her brain (most likely from a traumatic birth) that causes her muscles to not work correctly impacts both arms and both legs. It does NOT mean that her brain does not work, and that was something the neurologist stressed. He said obviously he doesn't know for sure because she doesn't talk but he believes that she understands everything that is going on, which we already knew! He told us he loved her smile, she had very engaging eyes, and that he was impressed by the progress she made in 3 weeks. When I asked what he thought about long term, he said he would not give a prognosis on what he thought she would be able to do because he just didn’t know. The brain is incredible and compensates for itself all the time, especially in young children. He said take her home, expose her to everything, stimulate her like she has never been before, and watch to see what she does. AND so that is exactly what we intend on doing. At first I was really mad because it was not what I expected. It took me a little while to work through being angry. I was especially angry at the babies home because they did NOTHING for her… NOTHING! I could have gone down a really easy path of being mad for Lola and sad for myself worrying about what she might not be able to do… because everyone who knows me well realizes that I talk a big game but I am a HUGE worrier! BUT we’re not going to do that because the reality is she makes my life better just by being in it so everything she learns to do will continue to bless our family. We are going to focus on the amazing things she has done already, take one day at a time, and be incredibly grateful that she is home and getting healthier and stronger everyday. Because if anything, a stay in the PICU will make you realize VERY quickly that it can always be worse!

Here we are going home and walking past the little guy on life support was just another reminder that we have so many reasons to be thankful and incredibly grateful!! Here is a picture of Lola and our super hero nurse. If you're ever in the ER and you get Miss Sue consider yourself LUCKY... and if you happen to be there at the same time as us, we're sorry but we got first dibs!

Since we came home Lola has been getting back into the routine of life and I can report that she is VERY happy to be home. See for yourself... a happier and hopefully heavier little girl!!



Cosley zoo with the Hume's.

SO the first day of official summer, we got an invite to Cosley zoo from our friends the Hume's. Don't get too excited about the word zoo... i'm not sure why they call it that, since it is a farm. BUT it is a very important place in our town and I have a lot of memeories there as a kid, so i was super excited to take Lola there.

My favorite memory was when my mom signed Kevin and i up for a how to be a farmer class. I don't remember much other then being less then thrilled about sitting in a hot classroom in the stinky barn for a lot of the day. However, one of my best memories is the day they told us to clean up the pigs. Kevin and i were very curious individuals and always wanting to learn you know... SO the subject of riding pigs came up in our conversation. WHICH clearly led to an experiment. It also ended very badly. I can tell you, so you don't have to try it yourself, that pigs do NOT in fact, enjoy being sat on.. much less rode. OOPS... Needless to say the "zoo" people were less the thrilled with our scientific experiment and wanted to send us home. My mom then informed them that was exactly what we were hoping for and she was sure that they could come up with a better punishment. AND they did. So Kevin and i spent the remainder of the day scooping cow and horse poop, having the best time ever.. because you can't break our spirit. THAT was FUNNY! 

SO everytime i go there, i think about riding pigs and it makes me happy to be there even before i get in the gate. Our trip was an excellent time, but don't worry we didn't put Lola on a pig... yet ;)

Here are some pictures of Lola and her friends David and Bryn.

Lola LOVED them, she gave David a BIG smile. SO cute!


Here are the girls just hanging out...


This is the best we could do taking a group picture...


Lola LOVES her Auntie Tina.. she smiles and laughs for her all the time. Its awesome!

I'm pretty sure this picture David took tells it all. Lola LOVED the zoo and we are already looking forward to going again soon! :)

First few weeks

Our first two weeks home have been VERY busy! We have been doing a lot of musts such as scheduling doctor appointments, calling specialists, and attempting to get plugged into the networks for families with kids with special needs both for Lola, and myself. It has been up and down regarding my coping with life, as well as Lola's. We are in the grand scheme though... adjusting to life with each other well... if i do say so myself. We have also attempted to have fun in the process.
Here are a few of the things we have done.



Lola met her Great Grandpa Jimmy



Great Grandma Ruth

Great Grandpa Sender

Her Godparents (Teresa and Brett) and Family

And some really great friends too

Deb and Leah Grace (and Seth too, but he was on a walk with my dad)

Played with cousin Maddie at her Birthday Party

And the Yurko's (some of our biggest fans/supporters) stopped by to meet Lola too! Here's me and Bran

 

Erin came out to meet Lola.

Sara stopped by on her lunch from the preschool and hooked me up with some lunch. She's the best!

AND ... She met her Aunt Rita

SO much for being LOW key when we got home... BUT Lola's fan club was tough to contain. There are others she met as well but i didn't have pictures. I'm telling you what we were certainly blessed with amazing people in our lives!

Lola also got to celebrate her first memorial day. We had awesome weather, almost too hot even for an African! SO we decided to bust out the pool and give it a whirl. AND it was a huge success!! Lola Loves the water which is perfect since we are already signed up for a swimming/therapy class!

The part she likes least is getting out, but thats what a warm up from Grandma is for!



Uncle Kevin, Aunt Tiffany, and cousin Mason came out too and we had a great time hanging around and eating an awesome dinner! It was great!


 

Mason was OK with Lola on HIS mommy's lap for a little while... And we caught this awesome moment where he leaned over and put his head on her. BUT it wasn't too long after that he decided this new cousin was alright ... on someone ELSE's Lap!! ha

It has been awesome so far and Lola has made HUGE progress in her social interations and overall development in a short period of time. She is smiling more, cooing/babbling more, and her personality is really starting come out! She doesn't show it yet if there are too many people because she still gets overwhelmed obviously. ALTHOUGH don't you worry she has learned to cry when i leave the room, and throw a BIG tantrum when she is mad or in pain.  WHICH Is amazing since when she first came out of the babies home she didn't make sounds or cry. Most parents don't celebrate tantrums but we LOVE them around here because they are new and a form of communication! :)