Neela's 2nd birthday approaching.....

Hi everyone ! Neela will be turning two years old this Monday the 27th...Can't believe we've had the privilege of having her as our sweet daughter. She has taught Bart and I patience, strength, and gave us the meaning of what unconditional love really was...............

So we wanted to kind of update you on how Neela is doing the past few month....She actually has been doing quite well, beside the fact that reacting hugely to mosquitoes the past month. She had one by her left eye a week ago and her whole left side of her eye area was massive making her eye swell shut. Thank heavens it was the one that we always patch....so she really didn't need to wear a patch those few days. I got to thinking about that mosquito bite as of lately...(For those of you who don't know or don't remember, Neela is supposed to be patched each and everyday for about 8 hours, which is mostly ALL of her waking hours, since she sleeps A LOT) The past three months, up until this week she has been refusing to keep her eye patch on that left eye. Bart and I have battled and battled trying to repatch just as quickly she rips on off. It has been so hard on both of us seeing her not agreeing with her doctor's plan for the development of her vision in her weak eye (rt one). I think for a while there we were going through about 60 patches a week...Keep in mind that you get a box (20 ct) that is about 6 bucks ! :( Not fun, and very expensive....esp when you find them everywhere. I even went on a bike ride the other day and there was one laying on the side of some random street in Elmore. :) She is sneaky...but sooooo smart about it. I have now resorted to buying extra large bandaids and cutting them in the shape of an eye patch for her. You can get a box of 15 and they are only a $1.00, WAY cheaper!! Like I said before this week has been particularly great for Neela in wearing that patch...I think the Lord worked on her a bit with that bug bite making that good eye swell shut, so that her weak eye actually had to work A LOT!! I think we've been getting about 6 to 7 hours these past few days, and I haven't even had to put mittens or socks on her hands!! Praise...Praise...Praise !! I just hope that maybe Neela is turning a corner with her weak eye...Our doctor told us that once her vision becomes better in her right eye she won't fight us sooo much 'cause she will be suffice with that patch on, 'cause she can see pretty well out of it :) YaYYYY!!! So this is great news that we want to share with you all. Bart had told me the other day that he prays each and everyday on his way to work for her neck (LM) and her right eye weakness. He is such a marvelous dad and husband to be driving to work at 3 am praying diligently for his sweet little princess.



As far as her LM issues, she has been stable and remaining healthy overall except for some triggered swelling on her neck, from her body working from them bug bites. Its weird that LMs can increase from even from a small mosquito. She still looks marvelous in our eyes, but we are feeling like she could benefit from another Ok-432 injection. We had found out, after seeing the not-so-good, horrible bed-side-manner ENT doc we saw at Mayo a month ago....that there is a doc who is working under the supervision of Dr. Richard Smith of UOI, which was Neela's doctor at UOI Hospitals. The doctor is out of the children's hospital in Minneapolis, MN. His name is Dr. Timothy Landers. We are going to be setting up a consult with him in the next few weeks. Hope to be able to help her with her increased swelling before the end of summer, esp before the cold/flu season.

Ran across this prayer and letter from a friend of mine on facebook...and she got it from a friend of a friend....so its been passed from one LM family to many others. I think it is a great letter I will forever keep for Neela.....

Dear Neela,

The day is soon coming when you will realize that you are different. This is a very important day, because at that moment you will take the first step toward either loving or hating the God who made you that way. If you choose the path of humility and joy, your fruit will be perseverance, character, and hope; and hope does not disappoint. But if you turn away and walk the path of bitterness, you will reap loneliness and tears.

Before you make your choice, consider Who made you. God knit you together in my womb; you are fearfully and wonderfully made; wonderful are His works. Your heavenly Father created you in just the way that would bring Him the most glory. Your weakness is His strength. Consider that you are in the company of one of the greatest of God’s servants: the apostle Paul. He, too, had a thorn in his flesh – used by the Lord to humble him, so that a path could be cleared for Him to show His mighty power and grace. Neela, I continually pray that you would have the attitude of Paul, when he wrote, “Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong.”

Know too, my daughter, that this life is short; trust in the Lord, and before you know it, you will have a brand new body, free from sin, pain, and suffering. As you rejoice before your Maker for all eternity, you will understand that this life is a vapor. Spend it giving, living, and loving. Turn away from self-pity and cultivate a heart of compassion. Do not let anyone look down on you, but set an example in speech, life, love, faith, and purity.

When others stare, jeer, ask hard questions, put down, ignore, leave you out, and tempt you to doubt God’s goodness, turn it into an opportunity to declare His marvellous works. Proclaim how He intervened to save your earthly life in April 2008. Tell others how he has sustained you and given you each breath. Be bold, as Paul was bold. Do not repay evil with evil or insult with insult, but with a blessing. Love your enemies and pray for those who persecute you. Bless and do not curse. Do not answer a fool according to his folly, or you will become like him. Have the same attitude of Christ, who, in His deepest moment of agony, prayed Father forgive them, for they know not what they do. Remember, like Joseph, that what the Enemy meant for evil, God intended for good.

Never for one moment doubt that you are any less loved, valued, or wanted because you are different. For some reason, God chose your father and I to have the awesome and overwhelming task of shepherding you toward Him. Be patient with us, as we too are weak, flawed, selfish sinners, fully dependent on our Savior for each moment. Live by our example of helplessness before Him, as He is a very present help in time of trouble.

Your dad and I will always and forever be here for you regarding anything...from having to help you with that stubborn flip-flop that is not fitting between your toes just so:)....Kissing boo-boos from bike falls.....to supporting you during procedures and doctor appointments. Your sisters, brothers, grandparents, aunts and uncles are here for you as well....
Neela, this is my prayer for you. We LOVE YOU .... Happy Birthday sweet...sweet girl.
(tears were literally soaking my cheeks as I read and wrote this)
Love to everyone who has prayed diligently for our daughter Neela...HE is marvelous and has done wonders because of your faithfulness. Thank you.

Trusting and Digging Deeper into Faith...

Well, we went to Neela's ENT appointment at Mayo Clinic yesterday. Bart and I were able to take Neela by ourselves, since my dear mother-in-law Judy, stayed home with the boys. We were able to be seen right when we arrived at 9:45. Our appointment wasn't until 10am...WOW! I thought this day is gonna be great :) The resident ENT examined Neela first and basically got his first introduction about LMs from Bart and I teaching him... and the drug Ok-432. Each and every time a doctor examines Neela they have to ask questions about her health issues. Neela's eye came into the picture quite a few times in the room yesterday...I think its because Neela was placed with two birth defects that are so extremely rare, they have to almost instantly try and figure out why and how that happened? I am really surprised they didn't want to test for any kind of 'syndrome' or deformity in addition to her LM. Well, let me say that whatever they would label Neela...I don't care at this point....We are her parents, we love her whatever may be the case with whatever syndrome she may or may not have. Finally, the ENT doc came into the room. She seemed rather nice and very patient. The first thing she asked us was, "What are your goals and motives for today's visit with Neela?" I began to ask, "Well, we are wondering about a plan for Neela's LM now or even in the future.' I also asked what treatment methods they use at the clinc. As she was finished with Neela's exam, she began to go into some of their methods they use at the clinic. One was surgery, they would extract all of the LM cystic tissue from Neela's neck. Basically means, all the large and small cysts that make Neela's area below her right ear puffy...would be gone! Also means, that Neela would forever be scarred right below her jawline. It would almost be like when someone has a face lift. I asked if there would be a risk of regrowth? She said it was highly doubtful in her case. I asked if there would be risk of her carotid nerves and arteries. She explained that there would be a risk since the LM (cysts are intertwined with the nerves and main facial artery.) Meaning...if something were to go wrong, Neela would have no movement or function of the right side of her face. Her second option of treatment would be alcohol or doxycycline sclerosing...which is more similar to Ok-432, but it can be a bit more irritating to underlying tissues in some patients. Her third option was sending us to the "Cities" - Minneapolis to see if Neela would qualify for another round of Ok-432, since they currently have a clinical study site there similar to UOI and Dr. Smith's site. This was amazing her hear, that there is possible hope for her to obtain another dose of Ok-432 if needed now or even in the future that was so close to us. She began to lecture to us about not needing to do anything with Neela at this point, since she wasn't symptomatic. This I totally agree with...since she was only sick a few times this past Winter/Spring, and one was just a gastrointestinal infection. She said that it was our decision either way, we could get a baseline MRI to see Neela's progress thus far. Then she said we could contact her whatever we decide, but nothing needed to be attended to right then and now. She also said, "Its not like she has cancer," which later I remembered these words. She said that we should schedule a 6 month follow up with her at the end of the appointment. Finally, she asked if there were any questions. I looked over at Bart and he was biting his lip rather tight. I instantly though, "Oh crap, what is he gonna do or say" :P I assumed he wasn't happy. He just came out and said, "I just wish we were back in Ia City." She smiled and left the room while giving us her contact info. I turned over to Bart and asked him what he was thinking? He began to explain that he was having extreme feelings of sadness and anger. He said, "Yes, she doesn't have a diagnosis of cancer...to me, as her dad, this LM is cancer." He began to vent that we should have never left UOI with Dr. Smith's care. His hands felt tied, as well as mine. Dr. Smith's goal was to have Neela's overall appearance to look at normal as possible when she starts kindergarten in a few years....we figure she is gonna have enough to deal with wearing a patch in school. I thought it is not about looking normal...its about addressing our overall needs and comfort of feeling like Neela's situation is being attended to, and not being dismissed. To follow up in 6 months kind of feels like your being put on the back burner 'til something bigger arises with her. We don't want that something 'bigger' to happen. Neela was due for an MRI in January with UOI, but had to cancel due to the insurance/job change. After talking with Bart, our plan is to get Neela an MRI asap. Our plan is to find a clinical study site for Ok-432 in our area. If we don't find one, we travel back to UOI and fight throughout the costs. In the end, we need to make sure that all of her macrocysts are completely gone. Bart and I aren't emotionally/mentally prepared for our daughter to go under the knife to repair what could be dealt with Ok-432 (well, the large cysts anyways.) So as of right now we are in the process of conversing with UOI and trying to find a contact at the Minnesota Children's Hospital in Minneapolis. Our main focus is to keep our faith going through this process, since we need HIS guidance more than ever now. Keep on praying for Neela's journey....it is gonna make this hurdle more bearable.

New Doctor...New Worries...God's New Plans

Well, I haven't been very good about updating you all on Neela's progress. I think its because she's been doing such a miraculous job with her lymphatic issues. We have much concentrated on her weakness in her right eye since extracting her cataract almost two years ago. We are now traveling to the Mayo Clinic in Rochester, MN for her Ophthalmology and ENT needs. It is about an hour and a half from our home. We have been seen by her contact lens doctors and Ophthalmologist quite a few times already. I have been quite happy with her care there. Bart and I pray that God has a new plan for her Lymphatic Malformation. Coming from the Univ. of Iowa Hospitals we had such a great relationship with her doctors there, unfortunately had to switch over to Mayo, due to Bart's new insurance issues. It was a shock to myself and Bart at first, but we prayed about our feelings and then felt reassured that it is God's next plan in her care and healing. Unfortunately also Mayo Clinic does not have the drug Ok-432 which Neela has benefited tremendously from thus far...She was in a study with Dr. Smith of the UOI for over a year and received three of these injections. I am very worried about Mayo's plan of treatment for her...I have been hopeful that they are so familiar with her condition, and have treated other children appropriately. We see her ENT doctor this Wednesday the 19th. Yes, Neela looks wonderful in her pictures, but underneath all that beauty she still has these little cysts under her skin (right side of her neck) that are just grueling at the chance of flaring up again, and with no OK-432 in sight, how will she do? These are my feelings as of right now...As you can see I don't have much trust right now, do I? Shame on me, the good Lord got us through a year ago when she could barely turn her head to one side to other 'cause of profuse swelling down to her chest bones. I pray for strength as of right now as her mother and as a devoted Christian. If ya think of it, please say a prayer for our sweet girl these upcoming few days...that our new ENT doc will be granted wisdom as far as a treatment plan for Neela's LM. Thank you friends and family....Love from Our Family to Yours !

Its Been Too Long!

WOW! Has it really been 7 months since my last blog entry...oh yea, and two injections ago for an update for Neela. I don't know really why I lost touch with her blogging...but I feel in my heart that I need to get back into this. First, for my sanity...and secondly, to let all of you know how she is doing physically with her LM, and her eye issues. Well, since my last entry (still ridiculous when I actually think I didn't even post her last two Ok-432s. She had injections in the months of July and late September. She did extraordinary with both, and had no complications or side affects from the drug. In November...God led us to a new job for Bart, working for Frito Lay as a route salesman, out of Blue Earth, Minnesota. The increase in yearly pay and better hours, and the fact that we would actually be able to 'buy' our own house, since we've been renting for seven years. The only bad part was moving....f o u r hours from Neela's physicians.

Neela had her last eye appointment in December. She is taking steps back as far as her vision is concerned. She is to be full time patched (meaning her 'good' eye is covered for most of her waking hours. This is such a battle, since she is older now...and has developed an attitude and personality about who is in control of what 'she' does. She knows what her 'contact bag' looks like, so I have to switch bags from month to month....She knows the sound of her patches are when they are opening....so instantly, she runs away from Bart or I...and says, "No!" "No!" "No!"...and hides behind whatever furniture is closest. She is resorting to buttering us up....when we are putting her lens in.. by hugging us so tightly that we can't lay her down to insert her contact....She pretends she just wants a 'hug'....a hug that lasts up to two whole minutes..anything, to pause off putting that lens in..The doctors weren't kidding us when they said the day she was diagnosed with her cataract that it was gonna be a long and hard process in redeveloping her vision~ post cataract removal. I think we are spending an average of $65 $75 a month in patches for her, since she is tearing them off just as soon as we put one on her....The stretchy gloves on her taped to her sleeve has been working though. She really looks like a boxer. I don't know what the heck I'm gonna do this summer, I'm sure I'm gonna get the 'looks' from people wondering why my lil girl has mittens on in the summertime. Oh well, right now we've gotta do what is best for her to see the world better someday. Neela's LM progress has been great ~ overall. Since her last injection she has shrunk down to just a little bit of puffiness behind her right ear. She is supposed to be having a follow up MRI in a few weeks to see how far she has come since starting the injections.

In December we ended up finding a house that is 9 miles south of Blue Earth sitting in a little town called Elmore. It is about 735 people...well, now officially with us, we can say 744. We live on the far north edge of town..... so we have neighbors, but they really can't see what we are doing since we are up on a hill and we aren't situated right next to any other houses close. I'm sure by summer everyone around us will get an eye full! I just hope the boys realize they aren't on the farm anymore....so we already had the talk about leaving clothes on while jumping on the trampoline....and going 'pee' inside, and not by the nearest tree. We got a great deal on a 'huge' house...that is big enough for the kids, myself and Bart (since he got his double garage....a loft for storage....and a woodworking shop....Oh, and a heated office off of the garage, but the four boys have already claimed that. The great thing about the garage is you don't have to go outside to get to it...there is an underground tunnel leading from our house. What I love about this house is the natural woodwork, the window benchseats, tons of stained glass. Two + 1/2 baths...one of the bathrooms is as big as a small bedroom....The other is just off our Master bedroom....I wouldn't have ever imagined having my own bathroom.....which the kids hardly use. I also love that every where you look in this house is a potential for storage, which we have a ton of..... We finally feel pretty settled in this little town after being her a whole month. We have painted a few rooms and have TONS more to do....new carpet, and refinishing an attic for the girls future bedroom/hideaway...Both Bart and I, had a rough month with having unsettling emotions about a new area....new house....new job....etc. We have found a great church, and sad to say that my new best friends are in their 80s, which is okay...'cause they enjoy our company and our kids. I love asking these ladies about life ~ & about the area where we now live and call 'home'. I've been keeping busy refinishing/painting furniture, making signs and decorating....which is so fun, since we have our 'own' house again! Oh yea, I forgot to mention the reason we got this beautiful house....Bart~he loves his new job at Frito Lay. He goes in pretty early, but on most to almost all days he is home before noon, which we all love! It is really nice when I need a break and NEED to get out, he's there to relieve me of kid duties......Well, enough for now....More Elmore, MN stories and Neela's journey will be updated more frequently, I promise!!.......Thanks be to God for what HE has done in our entire families' lives.... esp a place to actually call "HOME".....

Neela's First Ok-432 Injection

June 1, 2010

Neela ended up being discharged on Monday May 31... Memorial Day was nice to spend time with Bart and all of the kids together, since the last four days up until this day was Neela and I in the hospital. We had to be at the hospital on Tuesday June 1 at 7 am for Neela's first injection. I was a nervous wreck the whole way down to Iowa City. Bart and I prayed all the way down... to ourselves.. since we ended up having to drive two cars 'cause the docs didn't know if she was going to have to be admitted or not, since her past few weeks history with illness. We arrived two nurses, an anesthesiologist, and Neela's eye doctor were there asking questions and letting us know what was going to go on this morning... Yes Neela's eye doctors were there to check the pressures in both of her eyes, since she was status post cataract removal when she was three weeks of age. It is pretty routine for them to check her under general anesthesia every 6 months to a year. It just so happened to work out for the ophthalmology department to take advantage of Neela being asleep to do their part for her chart with them. I was told that it was going to take about two hours before hand from the nurses. We were asked by the anesthesiologist if we had any questions and we both said "No.' I think we just wanted to get things rolling for Neela and both of us (for our sanity). They anesthesiologist carried Neela away from Bart and I in a warm blanket, he was swift and blunt. I knew he had to be. Bart and I heard her crying for about 5 minutes as we walked out into the waiting area. We sat down and both kind of looked at each other and started to sob, yes... I'm sure Bart is going to be upset with me telling you this, but oh well. He apologized to me, and I said to him, "What, are you kidding me?"... "Bart you are entitled to break down every now and then, its completely normal. You are her father! You can't be "my rock" all of the time." We both got our composure back and went for a brief walk before going up to the lounge to eat something. We ended up taking a pager from the front desk so we would know when Neela needed us. About an hour went past and I saw the red lights and felt the vibration of the pager on the table beside both of us. I said, "Let's Go!" So we headed back down to the waiting area, and a receptionist said that Dr. Longmuir (Neela's eye doc) wanted to speak with us. I was a little relieved that one of the procedures was finished. She came into the room and told us that Neela's eyes look great and that the pressures were stable, meaning no glaucoma.. YEA! She said she was thrilled with how her vision is doing and how much she is progressing as far as growth in both of her eyes. She began to tell us that she thought that the cataract was caused from a disease Neela had in utero. She had began to tell us, that she has seen a lot of these cataracts from this fetal disease going strait into the retina, but was pleased with how Neela's just stopped a bit past the lens. I knew that God was in control on that one. He knew that we would be praying for... her eyes. :) About 15 minutes later, Dr. Richard Smith, Diane Burke, RN and Dr. Don Solomon came into our room and sat down like it was a rather nonprofessional meeting, it was very relaxing. They all said, "Went very well!" They began to tell us that Neela was injected in three areas of her cervicofacial area. They began to tell me they ran into two blood clots in her neck while aspirating those cysts. They said they would watch them, but thought they would dissolve within two weeks. The clots were caused by excessive trauma from all of the aspirations while she was hospitalized with the infections. They began to tell us a little bit about the drug ok-432... they told us that it was from Japan. It is has been used since 1990. They have had a lot of benefit from its use. Some kids see results with just one injection. Some kids may need up to four injections to get total relief. What the doctors did was they went into Neela's neck with needles. They aspirated to see if there was any fluid, in most cases there is in all of these LM cysts. It is either clear or blood tinged.. or yellow green if there is an infection present. Neela's was always a blood tinged. Anyways, back to the procedure. After aspirating, they inject the ok-432 into those cyst cavities. In about five to seven days it causes those walls in the cysts to collapse... meaning there will not allow any more lymph fluid to collect in those spaces, like Neela had. That is why her neck looked so large when she was sick. When someone is sick... lymph fluid rushes through the vessels to get to the blood stream to allow passage ... In Neela's case her lymph vessels were malformed, causing the lymph fluid to sit there since there were blockages in those vessels for the fluid to collect there. They are hoping in Neela's case that she will only need two of these injections to see results. I am hoping and praying within 6 weeks she will be down and I will be able to see her beautiful sweet little neck again. But if not, that's ok ... I know healing is on the way... AMEN ! Back to the meeting with the docs. They told us that this drug's side effects are extreme swelling in her neck and facial area, fever of 99 to 102, general achiness and fatigue. They told us that she will feel as if she has the flu. They told us the signs to watch for ... with breathing issues since the swelling could cut off her trachea. Listen for strider... looking for retraction of her rib cage, and blueness in her lips and nails. I was like.. "WHAT... I'm sure as heck not waiting until her lips and nails are blue to get her to the hospital." So they said that on day 3 to 5 will be the worst of these symptoms and effects from this drug. I was in complete panic when they told us what to watch for. I knew Neela depended on both Bart and I for getting oxygen to her body. ... Oh I don't think we've had that much responsibility since we've had any of these kiddos. Anyways, what needed to be done, we would do. We left and headed home... on our own and watched... listened. I even went on Utube to listen to strider breathing... oh yes I am obsessed, but I want to be prepared and ready for anything... Nothing is getting past me... even the doctor was getting drilled with my questions so bad that he told Bart... "Your wife is just trying to pin me down, isn't she?" Well when it comes to my kids and family... I will ask and do anything it takes for their health and safety... I think a couple of times I caught him off guard since I knew all about this disease from all of my research and learning... :) I guess that's pretty good, since he's the expert... :) I am relying on God full force these next few grueling days of waiting, listening, and watching... HE has Neela right where HE wants her... with her healing and comfort. HE is mighty and I trust in everything I have in me as a mother, a wife, a daughter and as a friend... that HE is Neela's CREATOR and knows exactly what is best for 'our family' and for our precious baby girl. I know one thing from this whole experience with Neela, she is gonna be one tough cookie with dealing with her four older brothers... she is going to be able to stand her own, with what all she's been through these past few months... Hang in there Neela...we are going to get to the end of all of this, soon, baby girl, soon..! We all love you and are incredibly astounded how brave and strong you are!!!

May 27, 2009

Neela's Ongoing Troubles with her LM...

Well here I am again... in the hospital with Neela. She was doing very good for a few days since being discharged last Saturday May 22... It hit her like a ton of bricks, Wednesday night at Clint's baseball game... Bart sensed that she didn't look quite right... I felt her head and not to our surprise felt "warm". I went home with her took her temp sure enough it was 101.0. Exactly not what you want when you've had your child on antibiotics for over a week. She was sluggish and not comfortable. Awoke Thursday am, in my gut she was headed back down to Iowa City to see the ENT guys. I called and asked what they wanted to do with her fever spiking up again. Without any hesitation they said, "bring her in". I had Tate and Beau with me that day, so it was grueling waiting it out to see the doctor when we arrived there. They were tired of these doctor visits, just like their baby sister, Neela. Doctor came in to see her in the exam room, I could tell the look on his face... "ADMIT". I knew it. He even put some numbing gel on her neck in two places so they could go in , again, and aspirate fluid from two places in her neck. They needed to culture it ..to see exactly where it is coming from. So after three hours at the hospital, Bart arrived, ALLELUIA ! (help with the wild boys, that wanted to get the heck out of that hospital). They got Neela settled into a room on the Peds Floor, (our home, away from home) sad to say... The nurse right away came and got her to take her to the treatment room to start her IV and to have the ENT docs aspirate her neck. After a grueling hour and a half... they withdrew 60 cc of fluid off her neck and put her IV in ... between that time...could hear her screams of pain... it was heart wrenching and horrible to hear... I felt as if someone was shoving a knife in my chest and pushing it in a little deeper the higher her cries got... She was pretty happy most of the evening, after all of the needles...... I think she felt better having that extra fluid and pressure relieved in her neck. She slept very well that night, awoke to medical students poking and prodding around the room at 5:45 am. I am beginning to realize to go to bed early at this hospital due to doctors making rounds very early. Ughh... I'm not a morning person, ask Bart. The docs had told me that her white blood count on admission on Wednesday was 21,000.. which is high... indicating an infection somewhere... Docs were concerned with these numbers and not really knowing if the infection was related to her LM or if she had an onset of pneumonia... (which was ruled out, had a chest xray to confirm) AMEN!... don't need to add that to her medical history. They were going to call in Infectious Control... meaning pediatric docs that specialize in infections. So met with that doctor, he wasn't concerned with Neela... he was going to check and see if a few of those bacteria from her LM snuck into her blood stream... but not wanting to think about that. We will see 'bout that possibly tomorrow. (Sat.) The pediatrician stated that he thought the infection was just a stubborn LM infection that didn't want to be treated with oral antibiotics. So the plan is for Neela to have the sclerosing therapy (ok-432) injections on Tuesday June 1. Doctors are wanting to keep her here 'til then, to make sure she is healthy... But also heard tonight that the ENT doc (Dr. Soloman) that is treating her and has been treating her through the past three infections in two months... is battling it out with Dr. Smith, her LM doctor.. about even doing the injection as scheduled, since the area has been aggravated so much. Dr Soloman has seen the worst and worst with Neela's pain and discomfort. He is thinking 'if we don't do these injections as planned.. then Neela will continue to fight this ongoing circle of infections 'til she does receive it'. Dr. Smith is in Spain as of right now, but they are going to discuss it tomorrow whether or not to receive the treatment... hope this all makes sense, its even confusing to me at times. As I look out Neela's hopsital room window, I see others move about and cars drive by... its so hard seeing the world keep "going" as our baby girl sits here in pain and faces the unknowns in the future. I need to hold onto that faith that is keeping me from going down the wrong path in life... God, my strength ... my refuge... Neela's healer... Please continue to pray for the doctors, that they make the right decision for Neela in regards to her healing and treatment this weekend... ! I miss my family terribly being together... this is just not our family... We are inseparable. We do everything together ! Bart took all the kids camping this weekend with the Driscolls... like we had anticipated all of us doing to "relax" this upcoming weekend. Oh how I long to be fighting mosquitoes and kids throwing punches and even the tattling. Neela misses smiling at her wild brothers and silly daddy ! Hoping and longing to be home before the upcoming Memorial Holiday. Thanks everyone for their kind words and prayers...:)

Neela's 2nd LM Infection.. Or So We Thought...

May 22, 2010

Still at the hospital... hopefully going home today. Miss my Bart, my husband, and my six other amazing little people at home. Neela ended up doing worse over the last day...the area right next to her right ear was protruding and ever so slightly reddening. She was uncomfortable still with the pain meds, and 2 antibiotics. So, on Friday morning, Neela had a medical student, five resident doctors, and two fellows visit her that am. They were all concerned with the inflammation and swelling not responding to any of the IV meds they had put her on in the last 24 hours. The ENT resident that admitted her on Wednesday, stated "Umm... we definitely need to do something about that, I don't like the looks of that." I thought to myself, so much for getting out of here today... we are a long haul from that. A few hours later the ENT "fellow" doctor came in and said that he had been conversing with Dr. Smith, (since he was out of town) and came up with a plan that they needed to aspirate some this fluid in her top structure of her LM, that is giving her all of the probs. I was okay with that, until they told me that they would have her awake. My first instinct was, 'Neela won't even let me kiss her on that part of her face, little lone having a pretty good size gauge needle going in there.' I trusted the doctors decisions regardless. It was a pretty much a long afternoon since all of the ENTs were in surgery that day. In between time, my parents had been keeping Neela and I company with bringing me meals... magazines... toys for Neela... whatever we needed.. ( TY mom and dad we appreciated this so much) As I was eating my late lunch at 3 pm... I heard a strange but familiar voice outside the door... it was Bart. He came in to greet myself, my parents and of course his "little woman", as he calls her. He said that he needed to use the restroom out in the hallway and wanted me to show him where it was.. So I did, and to my surprise, in the waiting room by the restrooms there were my six long waited for, missed kids. I say its the other 'crew' to our ever so amazing ship. Our "ship" really doesn't sail without its crew... 'our family' is tightly bonded like glue. I could tell Clint wasn't the same, as to all of this unknown chaos. He missed his little sister and of course 'me'. I wouldn't have thought since I am with 'him' constantly. I figured he'd be like, finally that woman is gone, so we can do what we pretty much want. (Not gonna fly to well with Gram Judy watching him ) Clint was better by the end of our visit though. In this time, Neela's doctors were ready for her aspiration of her 'abscess' (is what they kept calling it)... The resident told me that Neela probably wasn't going to like being held down, and to feel the pressure from the needle. They did give her some numbing gel on the skin, so she wouldn't feel the poke so much. I handed Neela to the nurse and told her to 'take care of Neela for us'... :) We were all pretty much in agony waiting and not wanting to hear her scream. It was about five minutes and I heard one of the nurses say, "Hi.. Neela!" I quickly told Bart... she's done. Went back out into the hall, and saw she was okay, but had huge crocodile tears in her eyes. The doctors came up to us and told us that in the 'abscess' part of her top structure of her LM.. the fluid they drew up was pretty clear... and that they drew up 40 cc of brownish, blood tinged fluid out of her bottom structure LM in her neck. They preceded to tell me that it wasn't pus or greenish in anyway. Which was not a relief of me... I really wish it would have been, then they would have cultured it, and would have sensitized it to antibiotics to find the "exact" one to take care of all of this. The doctors told us that Neela's LM had been aggravated and inflamed, which caused all of the swelling and redness. They said they will still culture it, and keep her on antibiotics. They continued to say that she will be very uncomfortable until she is better, and there is nothing they can do for that, except continue with her every four hours pain med. Neela just needed 'time' to heal and get better. She needed to get home to her normal routine and get lots of sleep in her own bed. She has been a little trooper through all of this.. She is such a inspiration to me, myself and I. She is strong willed and probably will be her whole entire life. I am happy with her care with her doctors at the University of Iowa Hospitals and Clinics.... they are passionate and wonderful at what they do everyday. I am blessed that its only an hour and a half from my front door. God put us in northeastern Iowa for a reason and I think being this close is one of 'em. Please continue with your flowing prayers for Neela...as to her journey with her LM is not even close to being over. Her injections are kind of iffy right now, since she is on such a high dose of antibiotics for the healing and recovery of her structure... Please pray that things subside with all of this, and that she 'will' be able to keep that appointment for the ok-432 injection to take place. Thank You... for following "Our Faith... Our Family".... will keep you updated as needed. God Bless !

Thank you to my partner... Bart for enduring this emotional time with Neela and I being apart from you.. I know it must have been hard for you to cont to work, while we didn't know what was going to unravel with Neela's illness. We are the 'couple' that can get through this turmoil with our beloved and sweet baby girl... We are both getting strong physically, emotionally and last but not least spiritually. ;)

Thank you to those who brought over meals .. Thank You for my sweet, ever so faithful mother in law who is always there right when we need her... even if its just a matter of hours that she needs to be at our house to watch the kiddos. We can always count on her ! Love you Judy !

Thank you to my dear friend Kelly, our friendship still amazes me... thanks for staying and helping me through a night at the hospital with Neela... luv ya!

Thank you to my parents who drove to stay in Iowa City to comfort Neela and I, since we were alone. I love you guys and your continued support and encouragement that Neela is gonna be okay :)

Thanks to everyone.. our family, friends, coworkers, and church congregation, and pastor... praying and praying for Neela's start to this journey.... We love all of you !